I believe in the power of prayer. I believe in the encouragement we feel each and every day because of the so many people praying for us, the many that have been praying for a long time.
As I posted on our FB earlier this week, Riley had an ENT appointment in Denver. The goal of the appointment (aside from it being #17 on her treatment plan) was to determine if her ear tubes are in fact out and what her ears look like, as well as how her hearing is. We saw the same ENT doc her did her last surgery, of her 2nd set of ear tubes and removing her adenoids while she was at Denver Childrens Hospital.
Riley's ear tube in her right ear has in fact come out and is no longer in the ear drum. She has a lot of fluid built up behind her right ear. Her hearing test went well but she was obviously hindered on her right side due to the fluid build up. I was really expecting the doctor to tell us she would be getting a 3rd set of tubes because of the already building fluid and her history of ear infections along with MRSA. He however feels her ears are the least of our concerns for 2 reasons:
1) He is much more concerned for her lungs that are filling with liquid from her reflux.
2) He feels he has found a cleft in her voice box.
WHAT?!?! How random I thought! I'm super concerned for her ears! He wants to go into her throat to examine the cleft to see how bad it is ect. A surgery will be done to correct the issue, or attempt to correct but cannot be done until her reflux surgery takes place. According to the doc, the reflux has caused the cleft so anything he does to help this particular issue, will just be undone by more reflux.
Her lungs are in a pretty awful state. So much that he says her lungs must be our focus. He is to call her team of doc's at National Jewish to do all he can to push the reflux surgery for asap. During the reflux surgery, he will go in and look at her voice box (so he doesn't have to put her under anesthesia twice)to determine the next step. The next step will likely mean a modified swallow test, showing much more of her voice box than her air ways (from her swallow test in January). He will be able to gather what results he needs from this test to perform the correct surgery. He feels this cleft in her voice box is the reason for her not talking, the reason she has stayed at the same 5 words for the last year.
Sometimes I wonder how in the world we were told we were bringing home a healthy baby from the hospital when she was born. We had no idea. As I usually do, I left this appointment with tears burning my eyes. I'm pretty good at holding my own during the appointments but after I don't do as well. The poor staff at both hospitals see me all too often walking out quickly before they see me crying.
Thankfully, Port was with me for this one. The good news? Riley has gained 14 oz since Feb 10th (her last appointment at National Jewish). We head back to Denver on Thursday of this week to meet with her team of doctors at National Jewish to discuss what progress has been made, what still needs to be done, a check up ect. Port won't be at this one with me and I'm pretty nervous.
Sometimes I wonder if people ever get so sick of us asking them for our prayers. I hesitate these days for I don't want to sound like a broken record. I often don't have good reports. It just gets worse to me and I fear others will give up. Please don't. With an upcoming deployment for our family, a special needs baby having most of her 7 if not all of her surgeries with Port gone, with life in general for us which is no where near normal, please don't give up. Your prayers for our girl are moving mountains and keeping us going in the midst of our night season.
As I took her to the alter once again this past Sunday, as I always am, I was surrounded with those who love us more than we can know. Those who haven't given up but are pressing harder in their prayers for our girl. To say we are thankful is an understatement.
This isn't about Riley being well. I no longer pray for her to be well for it may not be the will of God. He may have a different plan. I pray for His will instead, her comfort and happiness in all she deals with. I pray for her quality of life, for her knowing how loved she is, I pray for strength for us all. I pray that God so richly blesses those interceding on our behalf. As we take another piece of the puzzle, we continue down Riley's road.
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