Updates on Mason

Well, it has been an emotional 2 weeks. Many ups and downs. We had a great time celebrating Mason's bday. We are still in the works to finish his bday rap and video. When you continue reading, you'll see why it has not been first on our priority list. Last Monday (June 7th) we received a call from the wheelchair company that our insurance would not cover Mason's wheelchair. We could pay the $5,000 or try and find an alternative.

Tuesday, we met with Dr. W. He gave us the choices of putting Mason on a med that could give him neurological side effects for the rest of his life or do the fundoplication surgery. Fabulous choices!

Then Thursday we received a call about my genetic testing and it came back positive. This means that Mason received this condition from me and Kevin and I can no longer have children. Talk about a bad week!!!!!

By Friday I felt so defeated. I cried, yelled, screamed at God about all that had transpired that week. I told Him that I know He loved us and Mason but I just needed a break. Please give us direction and hope b/c all our choices were so far from what I wanted or imagined. All weekend I felt like I was in a bad dream. I had to go to training for the Virtual School Fri and Sat. and it ended up being a great distraction. Sunday morning as we pulled into church my heart was so heavy. I didn't feel like wearing a smile and pretending like my world was o.k.

After church Nanette and Ty asked Kevin and I if they could talk w/us. Nanette is in my Tuesday night bible study that I've been teaching since January. Tuesday nights have been my sanctuary and God has blessed my life with these girls. Anyway, she said they she and Ty had been praying about starting a non-profit ministry for families with children in the hospital. We were so excited about this project. The need for organizations like this are great. They went on to tell us that they wanted to call it "Mason's Miracles"!! I couldn't believe it. Tears filled my eyes as God gently reminded us that He is working an amazing plan through Mason. The plan can be hard and discouraging but He has GREAT things He is going to do with his life. I can't wait to give you more info on this organization. Everything is still in the works but I will pass it along as I receive it. Funny how God works b/c after we left them peace swept over me like a tidal wave. Knowing we were going to meet with the General Surgeon the next day, the anxiety I had been feeling was slowly subsiding.

Monday we met with Dr. Danielson (General Surgeon) about Mason's surgery. He said that when they did the fundo they would also fix his elevated diaphragm. (assuming anesthesia said it was o.k) The surgery will be July 14th and will take 3 -4 hrs. The blessing is they believe they can do it laparoscopically. This is a HUGE praise!!! The only glitch in the procedure may be if his GJ tube is too close to the operating site. If this is the case, they will need to remove the tube and perform that surgery again as well. Going in to this appt. I begged God for peace. He delivered 100%. We left feeling very comfortable with our surgeon and praising Him that they would not have to open Mason up completely. This will make a huge difference with recovery. We will remain in the hospital for a wk following surgery. We're praying that this will make a positive impact on Mason's life. They are still quite a few negatives about the surgery but for now we're not worrying about them. Surgery will take place July 14th.

Thursday we received a call from Shriners that they were able to work out Mason's wheelchair dilemma. They were able to pay what our insurance would not pay. We have a hint of how this may have occurred but we give all the glory to God. I couldn't believe it when they called. We should have his wheelchair here by the end of July beginning of August.

This coming Tuesday (22nd) we will be meeting with a doctor to talk about our options to have more children. At this point, I'm not sure how I feel about any decisions. If you could please keep us in your prayers as we make these decisions. We're asking God for the answer to be crystal clear.

I know that I'm throwing alot of information your way. I wanted to keep you updated with the latest information. If you could continue to pray for wisdom for Kevin and I and the doctors as we move forward. We are so excited about the many things that are on the horizon. We're praying that our time in the hospital will be great meeting new families and encouraging them by showing them the love of Jesus. I know that this may sound weird but there is a part of me that loves our hospital times. Most families are more open to hearing the gospel. So I've used these opportunities to love on them. I feel so blessed to have an amazing group of people that encourage and love our family. You all will never know how much you've blessed our lives. We love you so much!!

Happy Birthday Mason

I can't believe a year ago yesterday my baby boy came into the world. Kevin and I wanted to thank everyone for praying and loving our family this year. Some of you we have never met but you have made an incredible impact on our lives. Your words of encouragement have allowed us to get through many difficult days. On this day of celebration, we wanted to say thank you. Kevin put a video together of Mason from this past year. The first song is by Sidewalk Prophets. This is the song I sing to him every night "The words I would say". We love you all so much. Enjoy!!

Thank you for praying for our little boy

Double click on the video to view full screen

The rollercoaster comes to an end....... for now :)

Well, we will start off with all the good news. Mason was released from the hospital yesterday afternoon. We had a wonderful peaceful night at home. We are so thankful for a quick stay. My job interview went great and he said they would work out a position for me. Not sure when that would open but I'm so grateful for a wonderful day yesterday.



Dr. Wooresoryia (Dr. W) called a few minutes ago with Mason's test results. Here is the stinky part. Mason has SEVERE Acid Reflux. We knew this but he explained how severe to me. Usually when a child is on the meds that he is on a rate of 6 would be high for the acid level. Mason's levels were 29. :( Sooo we are going to try one more kind of medicine and then check in w/ the doc in 2 wks. In the mean time, he wants us to do all our research on fundoplication surgery and come to that appointment with our questions. He is also going to test his blood for one other thing. He is pretty sure he doesn't have it but wants to rule it out. I asked him on a scale from 1 -10 how worried he was and he said He's worried. (he said it nicer in doc terms :) ) If you could pray for wisdom for all of us. We have tried to avoid this surgery for several reasons. 1. It's very serious and means they will be opening his stomach. 2. This could potenially cause different kinds of problems. 3. The surgery will be repeated throughout his life. (like the shunt)

So now we pray and ask God for wisdom beyond measure and amazing peace. We try and put this in the back of our minds and enjoy our baby boy turning 1.

The Thrill of the rollercoaster continues...

I'm going to stay with my previous analogy. To me, the greatest part of a rollercoaster is you're able to scream at the top of your lungs and everyone is ok with that. Today I would have given anything to be on a fabulous rollercoaster. This morning Mason went for his procedure and it went great. We are still waiting for results from the biopsy. Dr. W noticed that the esophagus was still inflamed and the blood is coming from that area. He has seen improvements since we have begun the medicines but still not enough. His PH probe will be taken out tomorrow afternoon and based on those results as well as the biopsy we will make several decisions. First, change his meds and see if that would work. Second,put the fundoplication surgery back on the table. :( Our docs have been so great to try and avoid this surgery. They really are searching every avenue before cutting him open. If you could continue to pray for wisdom for the docs and Kevin and I. We want to make a wise decision that will improve his quality of life. Mason has gained great weight. We were told that he is now in the 25th percentile. Woo Hoo Mason!!!! The nurses have been amazed at how big he looks.

Now for the screaming rollercoaster part. At 1:30 today I was supposed to receive my Genetic testing results. They rolled Mason in 10 min. before I had to leave. We had our snuggle and prayer time before Grandma took over. I drove my 40 min. to Tampa General to have them tell me that the results were not in and it would be another two weeks. (Now you are seeing where the screaming would have been nice) Not hearing the results was fine but leaving Mason for nothing about put me over the edge. Instead of a rollercoaster, my car, Kevin,Mom,Aunt LiLi, Laura and Ashley had the great privilege of hearing my screams and cries. The blessing in all of this was the emotions I had pinned up inside I was able to get out. Now my mind is clear and ready for a great interview tomorrow. :)

Thank you for continuing to pray for our family. Your words and prayers are incredible. During Mason's procedure, I was waiting by myself. Which is unusual but perfect for today. I've been reading the book "I will Carry You" by Angie Smith. Fabulous book!!!! At the end of the chapter, she quoted 2 Corinthians 4:16 - 18. I have read and memorized these verses hundreds of times. (Growing up in Christian School/ Awana) Today I saw them in a whole new light.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, For what is seen is temporary, but what is unseen is eternal. "

Thank you Lord for giving us amazing hope and joy even when life is a rollercoaster.

Life is like a rollercoaster

Do you love roller coasters? Some love them some hate them and some are just in the middle. I'm all of the above. At least at one time in my life I was all three. I remember when I was in college I loved the thrill. I loved closing my eyes real tight when we went upside down. (I would pretend I was doing a long backhandspring. :) ) Now I wish I could ride them but I get soooo sick that it's not even worth it. I've learned life mirrors a rollercoaster so well. Today, we had plans for therapy, to hang with friends and have fun at home. Instead we're hanging out in the hospital. Mason woke up at 5:00 a.m. throwing up blood. They had us go to the ER and have admitted us once again. The great news is his shunt is doing great. None of his symptoms are shunt malfunction!!! We are praising God for this victory. Tomorrow morning they will be performing an endoscopy and ph probe. Basically, we're trying to figure out why he keeps throwing up blood. He's on two different reflux meds and this should not be happening. The doc again brought up the fundoplication surgery. We are all trying to avoid this but we'll have to wait and see. Then tomorrow I will receive my test results from the genetic testing. If you could please keep me in your prayers. As much as you try and convince yourself that it's fine, I know in my heart of hearts it will be a difficult day.

On Wednesday, I will be interviewing with the Virtual School. I've waited a year for this interview. I was so excited when they called. This job would allow me to work from home and would be a huge blessing for our family. The interview process is from 9 -4 so it will be a long day.

As you can see, our life is a bit of a rollercoaster. It has its ups and downs. The thing I love about rollercosters is you love when they're over. Some b/c you can go again. Some b/c you need to throw up. :) The great news is they will end. So you might as well, throw your hands up and enjoy the ride. Thank you Lord for always being the seatbelt on our ride. You are God alone from before time began. You are on your thrown. You are God Alone!!!Unchangeable, Unshakable, Unstopable that's what you are!!

Mason's first grab and play

Happy Mother's Day

Thank you for the butterflies

I apologize for being M.I.A. from the blog. This past month or so has been very hectic and emotional for me. I can't say it's any particular thing but putting my heart on paper wasn't an option. Mason is doing great!!! It's amazing to me how God chooses to bless you even when you're questioning His every move. Mason had his adenoid surgery two weeks ago. We didn't think much of this surgery as far as recovery went. This by far has been the hardest one for him to bounce back from. We ended up in the ER the day after b/c he was throwing up blood. We are finally on the up swing of it and he is feeling MUCH better. I'm so excited to share with you all the blessings we've seen in his life. Drum roll please....... He rolled over for the first time Friday night! We've put the video below. Three weeks ago he was sitting on his boppy looking at the toys hanging in front of him. For the first time he reached for a toy and put it in his mouth!!! Finally, last night we were watching him on the monitor and he spit out his pacifier and figured out how to use his fists to get it back in his mouth!!!! In all the crazy emotions I've been feeling, I can't ignore the blessings God is pouring out on our family.

We did meet with the invetro doctor and we had some positive and disappointing news. In a nutshell, he had me get tested for the genetic disorder. I will receive the results in 2 weeks from that test. When I met with the genetic counselor she did say she feels they will come back positive. That has been alot to swallow. Even though I felt that I had good grip on my emotions, it is still alot to work through. The only way Kevin and I could have a child together is to create an embryo first and then test it. We believe life begins at conception and therefore this is not an option for our family. We do have a couple of options that are not our first choice but we will continue to pray for God's perfect will.

My heart has also been heavy this month for our precious friends Lindsey and Adam. I put her blog address on the entry below. I want to share a story she shared on her blog. Today is the one year anniversary that Landon was laid in the arms of Jesus. Last Wednesday was his birthday. Lindsey was praying the night before his birthday that God would send a butterfly to them when they went to visit his graveside the next day. She didn't share this with her husband b/c she thought it was a silly request. When they went to visit Landon low and behold on his headstone was a beautiful butterfly. As she looked around, this butterfly was the only one she saw and the entire time they were there it flew around the place where they were standing. Coincidence??? Not a chance. This is a beautiful reminder of God's amazing love for us. Even when life hurts so deeply that we can't breathe, God is there to carry us. His love never ceases to amaze me. He and I have had many heart to hearts this month. It has been one of those times I just needed him to carry me. He has done that in an amazing way. Today, if you need a butterfly moment, don't hesitate to ask b/c He has one waiting for you!

Thank you for the butterflies