GI appointment

We had a good appointment today. The doctor has put Mason on Zantac to help with his reflux. We go back next week to discuss if it is working or not. I am also going to meet with a dietitian at All Children's next week to try and add more calories to my milk. We're hoping this will help Mason gain weight. If there are no improvements, then we will admit him at All Children's and begin running various tests on him. Please pray that this will work. I'm very nervous to put him on medication but want the vomiting to stop. I'm praying that he will not need to be on this for very long. Thank you for praying for Mason. He had another rough night last night. Hopefully, tonight will be a great one for him and his little body.

Neurologist/Shriners Visit

Sorry it has taken so long to get this update. Mason has had a rough weekend. Our neurologist appointment a couple of weeks ago went well. Mason is not having seizures!!! This is a huge blessing. She did mention a couple things that he may be developing but really it is to early to diagnose. I don't want to put those labels on him until it is more official. She said that he will have some significant delays because of the missing corpus collasum and hydrocephalus combination. Again, everything is a wait and see. On a good note, He is doing a great job holding his head steady. When we sit him on our lap, he is starting to hold his head for about 30 seconds. Praise the Lord!!!

Shriners was a great visit!!! We feel so blessed to have the Sexton family in our lives. Tyler has taken Mason under his wings and is so good to him. (We'll post pics of Mason with them soon). Mason was able to get his hard splints!!! He has to wear them anytime he is sleeping. We will meet with their Orthopedic surgeon in January to evaluate Mason' s hands. We'll decide then whether Mason will require surgery or not.

Right now if you could be praying that Mason will gain weight. He has only gained 9 oz. in 3 weeks. We are meeting with a GI specialist tomorrow to try and find out what is going on. He was throwing up all weekend. This gets very discouraging. We want to see what we need to be doing to help him. We're hoping that we can run some tests to see how his food is digesting and what is going on with his bowels.

This Saturday he has his first Trunk or Treat at church. We will be posting some cute pics next weekend. We've already practiced with his costume :). Thank you for keeping our little boy in your thoughts and prayers. We never feel alone in this journey. This past week has been very difficult for me. I guess it all hits me at different times. I begin to worry and think too far down the road. God reminded me this week of Joshua 1:9 "Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." I just needed Him to tell me that over and over. I pray you have a blessed week! Thank you for being a blessing to our family!

Happy 6 year Anniversary!!

Kevin and I celebrated our 6 yr. wedding anniversary in Orlando. We went away for two nights while Grandma and Grandpa watched Mason. (Actually it wasn't quite 48 hrs. but it felt like forever) We had a great time hanging out and sleeping and sleeping and sleeping :). I came back very well rested. I have an amazing husband and thank God for putting him in my life. October 10th still and will always go down as the 2nd best day of my life. (The first, of course is coming to know Christ) Here's to 50 more years baby! I won't say how old I'll be at that point. Pretty old!!! :)

Eye Appointment with Mason

Mason's appointment went great! Of course, he was good. Never cried a peep when they put the drops in his eyes. His eyes look great. He does not need glasses. Anything funny that his eyes are doing is due to his brain. There is nothing wrong with the eyes themselves. This was a huge answer to prayer. We will go back in a few months to make sure everything still looks good.

I have to say with all of these appointments God has truly blessed us with a little boy that goes with the flow. I stand in amazement that he never cries, Lays nice and still and is usually smiling. That to me is a miracle all in itself. It would be very stressful if he cried all the time. I'm praising the Lord for that. We'll update you again next week when we go see the neurologist. Have a great week!

Mason Update

We got into Shriners!!! This is a huge answer to prayer. They are not taking babies but thank you to Tyler he was able to get him in. Shriners will take care of all Mason's braces / surgeries lots of medical needs. Once he's in he's in. He will be sponsored until he is 18. We go October 21st for an overall orthopedic evaluation.

Today we have our eye appointment at 2:00. We will let you know how that is going. We need you to please pray that Mason gains weight. He's lost a pound. He went from being in the 50th percentile in weight to the 5th percentile. Not great!! We are going to be trying some different things the next two weeks to get his weight back up. I don't want to have to stop breastfeeding so I'm praying that some different changes will work. Thank you for keeping us in your prayers. Have a blessed week. Love, Wendy

Kirby's Wedding

Yeah Kirby and Celeste got married. So excited for them. We loved being apart of their special day!

Kirby's Wedding

GO BULLS!!!/Neurosurgeon appt.

First we have to give it up for our USF Bulls!! For those of you that don't know our family as well. Kevin played football at USF. He was the first person drafted from Tallahassee to play at USF and he has been waiting 13 years for them to play FSU. Even though Kevin is from Ttown he is not a fan of the Seminoles. He was so excited about the game Sat. and elated that they won!!!

Now for Mason, :) We met with Dr. Rodriguez on Thursday. Mason is missing his corpus callosum in his brain. That is the middle part of your brain that connects the two hemispheres. His ventricles are enlarged and misshapen. What does this mean? Means he will have developmental delays. How delayed? Only time will tell. Dr. R said he has seen brains like this and the child does pretty well. He has also seen this and they really struggle. We will be continuing to stimulate him any way we can. He did say that he wouldn't classify him as severe because his appearance isn't as severe.

From here we have two more appointments, October 8th we go to the optometrist to take a look at his eyes. He's having a hard time tracking images and light. October 15 we will go see the Neurologist. She will be doing an EKG on his brain to make sure he's not having seizures. Then we will be able to discuss with her his development.

Believe it or not we left the appointment feeling good and optimistic. I was really struggling with the Lord on Wednesday. I had so many questions that I may never get answers as to "why". After having a fantastic pitty party for myself, I felt God wrap his loving arms around me. I begged him for hope. I needed something to hold on to to keep me going. I felt myself starting to spiral down a black hole and I didn't want to be there. I asked God to carry me because I didn't have the energy to walk at those moments. Before we went to the appt. On Thurs morning, I was listening to the Joy FM. My favorite song by Sidewalk Prophets came on. (This is the song I sing to Mason everyday). I was feeding Mason and listening again to the words that I've memorized. I felt God say to me this time these words are for you. As I listened tears ran down my face because I knew that even in the times when we are so discouraged and frustrated with life God is there. He's just waiting for us to ask him for help. If you are not familiar with the song it says "Be strong in the Lord and never give up hope, You're going to do great things I already know. God's got his hand on you so don't live life in Fear. Forgive and Forget but don't forget why you're here .Take your time to pray and thank God for each day. That was the hope that I needed from him on Thursday. Even though some of the news wasn't the best Thursday we left knowing that God is going to continue to do great things!

We'll be posting pictures of our trip to Tallahassee later this week. Have a blessed week, Wendy

Thank you for all the words of encouragement about yesterdays appointment. First, we'll begin with the positive. Mason, after 3 1/2 long months of pumping, has decided that breastfeeding is a great idea!!! This is such a miracle to us. We're so proud of him and he is eating like a champ.

Next, we had a really good appointment yesterday. Dr. Ranelle was very good and allowed us to ask as many questions as we wanted. Some of the diagnosis, as I'm sure you know, is not great. Mason will be mentally retarded and have issues with walking and muscle development. To what degree of these things only God knows. Like Dr. R said Mason will write his own book. We were prepared for this so it was not a big shock. If we really sit and think about it it is overwhelming and upsetting. Our prayer is that we only focus on now not 10 years from now. Do what we can do to give him the greatest life possible. To be honest, it is easy now because it is not as obvious. I know it will get harder as he gets older. Of course, my heart breaks when I think about his life down the road. I just have to remind myself that God has it all under control. Things that seem so difficult to understand, God will give us the strength to cross that bridge when we come to it.

They still want me to get tested. There is a slight chance that I may not carry the gene. I would be very surprised but we'll do it. We can go the route of Invitro if we want to have another child. We would both love to give him a sibling. We will begin discussions on that in January. We think it would help Mason to have a brother or sister to push him along. We would wait until next summer to get pregnant. At least that is still a possibility.

As you pray, please pray that God will not allow us to get ahead of ourselves. Take one day at a time and enjoy it! Don't worry about tomorrow. I'm praying for Mason that he will know God and understand his word. That he will be able to share with others his testimony. We're hoping to receive more information on Thursday. We will be able to look at his brain and see how it is developing. We have lots of questions for the Neurosurgeon. I will update the blog again Thursday with what we learn from that appointment. I wanted to post great pics of Mason. The pic of He and Kevin is my favorite. Like father Like son. Have a blessed week.

Love you ,Wendy


Let him sleep for when he wakes he will move mountains

Genetic testing results

This morning I was taking Mason to Pt. As I was waiting, I received a call from our pediatrican. Mason tested positive for Xlink. I think I knew this was coming and as much as you try and prepare yourself it is still a shock. On one hands our hearts are broken and the other were so grateful that God has chosen us to walk this journey. We don't have all the answers and probably won't for awhile. The one positive side is that on the 21st we can ask all the questions we have. You can look it up it is Xlink Hydrocephelus. As you will see, it has alot of tuff things to swallow. This also effects us if we want to have more children. At this point is not a possibility. Thank you for your prayers. We're going to need them as we process all of this and find ways that we can best help Mason. My only prayer to the Lord is that Mason will know HIM and understand God's word. thank you again. Love, Wendy