They had a ball!

As most of you know, this weekend was the Father/Daughter dance at the Crown Plaza this weekend. Last year Port and Leea weren't able to attend because Riley was in the hospital. But THIS year they were able to go!!!! I've posted a few of my fav pics:)



we started off the day getting Leea's hair done by a fellow army wife friend


daddy gives her a beautiful corsage


a true daddy/daughter team



our beautiful girl


hand in hand

:)

Riley's Road: It's back?!

I've learned a valuable lesson once again this week in terms of our Riley girl's health. While doctors and nurses make mistakes as we all do, nothing they do for a patient is 100% guaranteed...I still place trust in what they tell me, I value their opinion's even if I don't agree or they are hard to hear.

Several weeks ago we were told by a nurse that Riley's CF results were negative only to be told later that day, that the nurse had made a human error and read us someone else's results. It rocked me in a big way. I was angry but trying hard to forgive.

Last week we were told by one of Riley's doctors that her CF results had come back and are indeed negative. We were told the CF could finally be put to rest and never have to deal with it again. Until yesterday.

I always struggle with Riley's doc appointments bc it seems they just get worse. The news, the ups and downs of it all. Yesterday, while at one of the top hospitals in the nations for year after year, I was told that once again Riley's test results for CF had been misread to us. Struggling to control my fury, I listened to what was being said.

1) "We are not out of the woods" as her doctor shared with me. The Delta F508 gene had been detected after all. This particular gene is the most common gene found in those who have CF. The test was done 3 times to confirm that the gene is in fact present. As of now Riley is a carrier for the gene (she can potentially have CF children someday as a carrier of the gene.) She must have a high powered sweat test done next week (never mind the 6 sweat test she has had in the past with no valid result) to get either another positive to confirm she has CF or a negative to combat the gene found, making it so that she doesn't have CF.

2)Our ENT did in fact send his notes to her docs at National Jewish but failed to mention any of the news about the cleft in her voice box he found. He states she needs the reflux surgery ASAP and then we can work more on her ears. Her doc's at National Jewish feel he didn't mention such vital information bc the only way to detect something of this magnitude for sure is to take a camera probe down her throat. Since he didn't do that during her appt, he simply didn't mention it.

3)Riley's pediatrician has apparently turned down the need for the reflux surgery that all of her other doc's say needs so badly to happen. Without the pediatrician's go ahead, it can't happen. We are baffled as to why she would turn something down that we've been told Riley needs so badly, something that seems to be making the rest of her body so sick.

The doctor's God has placed on our path can't seem to agree, to make a move on Riley's behalf. In the 5 weeks since her last appointment we have not received one phone call of a series we have been waiting for (frm genetics, therapists ect). Unfortunately, with active duty military insurance, once you have been referred to a specialists, you can't call and make the appointment yourself. You must wait for that doctor to call you, once referrals have been processed and the doctor is ready to see you.

I'm reminded once again that I must be oh so careful for the amount of trust I put in these doctors. Our hearts seem to stay in a constant ache for our girl. It's so hard to be the parent here, feeling like you aren't doing enough, feeling like you've messed up somewhere along the way.

I ask God why CF has come back again, for the 3rd time. While the doctors clock out and go to take care of their own families, Port and I wrestle with the what if's, the room for human error, the heartache. I have felt fury like I have never felt before. I feel the closest to giving up that I ever have. So what if my giving up results in us not knowing? I have questioned the amount of sanity or sound mind I really have.

I am haunted at Riley's pediatrician's view on the CF issue. She has felt Riley shows CF symptoms since she was 10 months old.

Once again, a turn we didn't see coming on Riley's road. God promises He will never leave. We cling to that today with what is left.

Simple Mom

Simple Mom is all the rage on blogs right now and now I know why! I checked out her blog yesterday and it is AMAZING! She has oodles of tips on keeping your homeschooling organized, your home in order, you name it and she has a solution! Right now she's hosting a 5 week challenge to totally organize your home by giving you one assignment a week. It's great and I encourage you to check her out! Let's put things back in order, get our homes and schooling organized just in time for spring:)

Nichole

Riley's Road: Say what?!

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.

She's 7!

Our Leea turned 7 last week! She woke to a giant homemade cookie cake, a panda necklace (she's obsessed and always has been with pandas), a huge stack of mini chocolate chip pancakes and a message on her ipod from daddy.

After the morning festivities, our family baby sitter was here to keep Carson and Riley so Leea and I could go have girl time. It was pedicures, lunch and shopping at her favorite store, Justice.

She was so excited to spend the day with me but really I was the one so blessed...a day with my girl.

Leea, you can't possibly know how much you are loved, what strength and character you show at your young age. You inspire and encourage me. We are so proud of you. It is our prayer that your life continues to be so blessed, that you continue to take the hard and find God working as He so faithfully does. May you stay ever close to Him. We love you Biscuit!

daddy, momma, bubba and sister