A piece of the puzzle

Before I get into the updates I would very much like to thank everyone for following our blog, for your prayers and encouragement, for your acts of service! At just the right time, your texts, FB mssgs, email and calls have come thru!

We are home for the weekend but before we get into family time I wanted to send out an update! This week after Riley's probe test (the tube in her nose, throat and tummy for 24 hrs) we got some very shocking results. In the 24 hours that the tube was in, Riley had 55 acid reflux episodes. Acidic reflux is coming all the way to the top of her throat (near vomiting) and staying there for 2-3 min before going back down and coming back up. It is almost a constant process going on in her body. This explains all the gagging, coughing, chocking ect. She in the process is aspirating to her lungs and ears. This means that during the process, food and drink are making their way to her lungs and even her inner ear. It comes across as asthma symptoms, (wheezing, choking, unable to breath in general) and as ear infections as her inner ear fills with yuck. The doctors now wonder if she really has asthma or if she's just aspirating all the time. The asthma meds help and have for so long bc they open her airwaves, give her air when she can't get it.

The next day she had an upper GI to show just what goes on in her throat and tummy. During this test, Riley has to lay down flat (near impossible for her as she can never breathe laying flat) and drink a milkshake like substance. As she was doing this we could literally see all the fluid coming back up her throat and going back down, over and over again.

Doctors think she has been this way since birth. Her asthma symptoms, gagging, unable to eat food, unable to lay flat, random vomiting, unable to eat sitting still, all point to the reflux. It was heartbreaking to hear to say the least. Though we were glad it wasn't worse, to think your baby has been struggling this way for 21 months, having constant acidic yuck going up and down her throat, having this yuck sitting at the very top of the throat so she always feels the need to be sick, having constant ear infections bc of the yuck reaching her ears....it's hard to hear.

Riley also had a skin allergy test this week consisting of 14 pokes on her back to see if she had allergic reactions to the most common allergies such as mold, weed, dog, cat ect. All came back clear so we have no allergies!

On Friday she had several labs done, checking for other possibilities such as gene CF,, lung diseases ect. This coming week we will be back Monday-Friday for more tests. She has a lung test, to look and see what kind of fluid her lungs, a biopsy of her nose to see if the tiny nose and ear hairs are functioning properly of if they are bringing in and trapping dust and such in her lungs and ears. She will have a swallow test to see how she swallows and if her airways are functioning or if fluid goes straight to the lungs. She will have her 3rd MRSA culture to hopefully rule out that the MRSA has come back. We get a daily schedule at the hospital so we will know more on Monday morning!

Thank you all for your many prayers on our behalf, for your words of encouragement, for the meals, for the calls and texts.

A special thank you to our pastors who drove to Denver and paid us a wonderful visit, to the ladies of our church making constant meals, to the family members who have helped us financially during this time, giving us relief and allowing us to take care of business.

And lastly a special thank you to the Renyolds, our dear friends of 4 years. As most of you know they have had Leea and Carson all week long for very long hours. They have taken the kids for fun outings, played with them at home, helped Leea with her schooling, fed them, loved on them, taken them at 5 in the morning, been more than flexible as we've had little idea of what to expect next. There are no words to describe how you feel, knowing your kids are taken care of, they are being reassured and loved on. They are given room to be emotional while trying to keep their day as normal as possible. There are simply no words to thank someone for what they have done. Providing our kids with a loving, safe and godly environment, adjusting to what's happening for our sake, putting your own family aside to help our family. How do you possibly thank someone for doing such as this? I pray all day, never stopping that the Lord would bless the Renyolds beyond anything they have ever seen. That He would shine upon them as never before.

This week would be so much harder, near impossible without the love that everyone has shown us.

I will go for now for some much needed family time. A whole 2 days with my family all in the same place....I am indeed one happy momma right now:)