Riley's Road

So many people over the last 2 yrs of Riley's life have invested so much into our family by way or prayers, encouragement, love and much more. For that reason, Port and I have decided to update everyone on the biggest upcoming steps in Riley's life. It is now, more than ever that we need prayers.

Thursday I took Riley to Denver for what was to be a check up appt. At the end of the day I was able to spend an entire 2 hours with the doctor. I couldn't believe we would get that much time with her but I would soon find out.

Over the last few weeks Riley has digressed greatly to the way she was before she went into the hospital...not eating, not sleeping, constant crying and fussiness ect.

Thursday a lung function test was done to determine the strength of Riley's lungs. For most children/babies 3 doses of a medicine are given as a breathing treatment and the lungs are then examined. Riley had one diluted dose of medicine and went into respiratory distress, resulting in needing an albuterol treatment. This confirms she has asthma. Her lungs are not as strong as we hoped. During this time she was aspirating into her lungs..proving the doc's theory even more. She has been put back on her asthma meds, a higher dose now and with an inhaler instead of a nebulizer.

Her alkalies heels on both legs remain curved so we are being referred to an orthopedic surgeon to discuss leg braces/ surgery.

The ear tube in her left ear has totally removed itself from the ear drum and will be coming out of her ear any day now. We are being sent back to the ENT for a 3rd set of tubes as her doc doesn't feel she is ready to be without them. She will also have another in depth hearing test done to see if she has hearing loss/damage but she doesn't expect a normal result with one of the tubes out.

We are being referred to a surgeon in Denver to discuss the surgery for the acid reflux, to close the flap. Another reflux med was added today but her doc says they have now done all that can be done with only medicine.

Riley has gained not an ounce since her stay at the the hospital last month so we have been recommended for a feeding tube which could stay in as long as 2 yrs...until Riley can eat, feed herself and get the calories she needs to thrive. She has been under weight for so long, to continue not gaining leads her doc to think we must be more aggressive in her treatment.

She is being set up for genetic testing..looking at the brain and all organ function. Her doc feels all the symptoms, all the health issues could be a genetic/neuro disorder that hasn't been found yet.

While we still wait on the CF test, her docs say they will call as soon as they get the results and are going to start setting up appts asap. Her doc is calling her pediatrician in the morning to get her thoughts on Riley's care, the possible surgeries...

Her doc says I must make a way to get Riley's therapies taken care of here in the Springs but I'm just unsure of how to do that with 2 other kids and homeschooling. Her doc says therapies are crucial now. She says I need to accept and come to terms with a chronically ill baby and start reaching out for help. I refused the classes for families and parents of chronically ill children while at the hospital but I suppose I did myself more harm that good.

I have spent the better part of the last 4 days in tears. Tear, tears and more tears. I have had harsh words spoken, people so kindly sharing their criticism but I understand that they just want to help....they just don't know how.

Our faith is strong, stronger than ever. Our God is in control, He is ever faithful and He made Riley just this way. His word says He will never leave me...that He's ever so close when I am in such grief, when I can't form words to pray to Him, showing me all the more that His presence is all around me. When I can't breath for how my heart hurts, He is right beside me. He will be glorified, He will be seen thru our little girl.

I pray that as we start yet another journey, my focus will be more and more on Him and less on my circumstances, that others will see Him at work in our baby, in our lives, that those who don't know Him will call on Him.