Isolation

At 12:30am I was informed that Maelee's urine culture came back with an antibiotic resistant bacteria.  Therefore, we are now in contact isolation.  Fun!  Thankfully they are allowing me to be at the bedside without a gown and wear gloves during diaper changes.  I was worried about this last night.  I did not want Maelee to think that I turned into one of "them."  I want her to know and trust that I am here to stay.  I am her mama.  I can be trusted.  Please pray that the new IV antibiotic they started will take care of this urinary tract infection.  At this point it will be a ten day course of treatment.  They are hoping to send us home early next week, so the tentative plan is to go home with the picc line in place and give the rest of the IV antibiotics at home.

Today we had visits from some new people on the team.  First was the early wake up call from general surgery.  They went over the g-tube placement that will happen tomorrow.  Next, we met developmental rehab.  This new doctor was quite overwhelming!  By the time she left, she planned to change every treatment plan and add several new specialties.  This was quite shocking!  Later, the general pediatric team came around and smoothed everything over. We agreed that we need to address the acute needs so that we can get home.  There are therapies and equipment needs that will be addressed outpatient.  Lastly, we met with genetics.  They are planning to get some biopsies during surgery and possibly some additional labs.  They are looking to rule out a genetic cause to the paralysis and any progressive diseases.

Although it has been a challenge to start off our time in the hospital, it has been a blessing.  Tonight I had the opportunity to share our adoption testimony with our night nurses.  It is joy to share about our faith in Christ and God's beautiful orchestration of our family.  We pray that we will continue to have opportunities to glorify God.  I was reminded of shining a light for Jesus in my Bible reading today.  "While I am in the world, I am the light of the world," John 9:5.  May we let His light SHINE!

Tomorrow Maelee will have surgery around 2pm.  She will have the g-tube placement, dental work, and a muscle biopsy.  That is at least the plan for now.  There is still some coordination going on among the teams.  Tomorrow morning we will have a final plan.  Pray that the surgery will go well.  Pray for skilled hands and wisdom for the doctors.  Pray for Maelee.  Pray for minimal pain, continued trust, and understanding.

Thank you for continuing to walk this journey with us.  We would not be here without our supportive village.

Maelee loves to eat together. "Mama!"  She points to the chair for me to sit.  It is our new little tradition to have our meals sitting next to each other.  See the milk---she drank 9 sips!  Breaking records over here today!

Enjoying the smiles! :)

Her cheezy smile kills us!

Full of kisses tonight!