Showing posts with label Austin's Journey. Show all posts

Dear Family & Friends,

During the days right around Austin's surgery, we were unable to spend time on our laptops, and in a few instances, we were unable to even get internet access. So, since I couldn't update the blog regularly (in "real time"), I kept a journal of what we did each day, what we were feeling, and what we experienced each step of the way. Over the next few days, I will 'transcribe' this journal to an electronic format via blog entries. I kept this journal so that Austin can see it when he is grown and so that it will be a reminder to him of how faithful our God truly is! I also hope that it can serve as a reminder to him that he was very strong and courageous through it all. My hope & prayer also is that some of our friends and family will read these entries and find encouragement in them...

Because He Lives,

Joe & Cyndi

Today, we reluctantly left our comfortable, safe home and we headed for UAB Children's Hospital in Birmingham to get Austin ready for his shunt placement surgery tomorrow, June 10th. It was a long day that started at 6 AM, on the 9th, and concluded around 1 AM, the morning of the 10th. Though, we were busy and on the go from doctor's appointment, to anesthesia, to the lab, Austin never complained once. He was calm and peaceful and a joy to be around.

We had a 1 PM appointment at the neurosurgery clinic to see Dr. Oakes. This was our opportunity to ask more questions and to learn more about Austin's shunt placement surgery. We also completed an anesthesia consult and then went to the lab to have blood drawn.

The visit with Dr. Oakes went extremely well and helped answer a TON of questions for us. We were able to ask him more specifics about the surgery and we learned more about the placement of the shunt and he explained how it will work & exactly how they will place it in his brain. We also saw the actual shunt (a replica of the actual of course) and it amazed us that this will be placed into Austin's brain in less than 24 hours. WOW- modern technology is unreal! I found that it was a humbling experience to realize that we cannot fix this for our son. We need to trust our Heavenly Father and this talented neurosurgeon to 'fix' our son's brain. This put us in a place of complete and total humility like nothing we have ever experienced before.

We are trusting God's hand in all of this and we can see His provisions at every turn! It is unfathomable to me that He pre-destined this day and June 10th as well. He knew everything that would happen to Austin in these days and He has been there. So, knowing that our Heavenly Father, who loves Austin so much more than we do, has already seen what tomorrow holds, we know we can trust His heart, even when we can't see His hand! We would not have chosen this path for Austin, but we are earthly, imperfect parents with earthly eyes and a love for our children that wants them to endure as little pain as possible. But, our God knows the plans He has for our family and our son and we know He is faithful to see those plans to fruition, pain, joy, & all! We also know that He knows what will make us stronger and prepare us for what He has in store. So, we will go to sleep tonight, albeit for only a few short hours, trusting that He will meet us there, at that hospital, tomorrow!!

I have put together a video below of our day on Tuesday, including pictures of the shunt and some explanations about how it will work. I plan on updating the blog again tomorrow, and in the days ahead as well, with pictures and descriptions of each day, including the surgery day, and recovery days that we have in store.

The video is accompanied by one of Austin's favorite praise songs, "How Great Is Our God". It is so true, that we serve a Great God, so it is only fitting that this song is sung each time this video is played.

You will notice at the beginning of the video that both of our children were sleeping peacefully on the ride over earlier today. They didn't have a care in the world. They simply knew that they were with their parents, whom they trust to take care of them, and they rested peacefully along the way. They knew they were on a journey, but they trusted us and simply rested. Oh, how I need to "trust and simply rest" on this journey that I am on! How hard that is for me to do- trust and simply rest in my Father's loving hands!

"Don't blink! Just like that, you're 6 years old and you take a nap, and you wake up and you're 25 and your high school sweetheart becomes your wife... 100 years goes faster than you think! So, Don't Blink...."

Those are not my words. They are a songwriter's words, but those words have found a place in my heart over the past year. Those words pretty much summarize how FAST the past 8 years of our lives have gone by... in a blink, in a moment, & much, much too fast!! And we don't see it slowing down any time soon!!

It seems that May 22, 2001 was just YESTERDAY and we were holding our daughter for the first time in our arms. Then, less than 12 months later, 50 weeks to be exact, to the day, we were incredibly blessed to be holding our son, on May 8, 2002. AMAZING!!

Then, we blinked and Austin is 7 years old today!! It seems that the older he & his sister get, the FASTER the years go by. I have really started to think about what we are doing with our days with them and with the precious, fleeting moments that we have together....

Are we teaching them...

• To love God with their whole hearts?
• To love others freely and purely?
• To laugh and play and to not take life too seriously?
• To appreciate each moment, each day, each memory?
• Are we showing them how you can love one another in a marriage completely, faults and all?
• Are we teaching them not to blink, so you don't miss a moment with the ones you love?

Austin, I pray that Daddy & I are teaching you & your sister the important things-- things that last, things that are eternal, and things that really, really matter- like family, friends, investing in others, & loving with your whole heart! We pray that you grow to be a strong man of God & a person who lives life to the fullest!!! We pray that we are teaching you to love freely, forgive fully, and follow after God with your whole heart!!

I am re-posting a video I put together for his 6th birthday last year. I am posting this because it is one of Austin's favorites and he loves this song. So, some of you have seen it before and for that, I apologize, but it gives a great glimpse into who Austin is. I hope you enjoy watching this short video, because I know we enjoyed living these moments with him. Remember, when it comes to your family, don't blink, because if you do, you will miss something and every moment with your loved ones is a precious gift!

Austin, we hope you have a blessed, HEALTHY year ahead of you son! We love you so very much! And, we are SO PROUD of the faith & courage you have shown over the past few months! Happy 7th birthday little man!!

Love,

Mommy & Daddy

How do you get from point A to point B? Sometimes the answer to that simple question is NOT so simple. Sometimes, you just don't know how you are going to get there, but eventually, with God's grace, you do. And then other times, you don't have the words to tell someone you care about, who is hurting, how they are going to get from point A to point B. That can be a loaded question. It was a loaded question for me the other evening while I was tucking my son into bed....

We were wrapping up our nightly routine... talking together, putting his favorite classical music on to play (Yo-Yo Ma), praying, and saying good night. This is when Austin asked me, 'Mommy, they ARE going to go through my mouth to put that shunt in my brain right?' I was stunned. I hesitated for a moment and then I realized that I need to give him an honest answer. So, I replied, 'No, son, that is not how they will put the shunt in your brain.'

He just stared at me and then he asked the loaded question, 'Then, mommy, how will they get it in THERE? How will they get the shunt in my brain?' My heart broke for him. He has been FINE with this surgery for the past week or so, but that was when he thought they were going through his mouth to get there. But, that was before.... BEFORE he realized they will have to make incisions in his brain to get there & BEFORE he realized that it might be more painful than he originally thought. (Have you ever been okay with a plan or something you were going through until you realized it had become more painful that you thought it would? I know I have!)

So, after I gathered my composure, and I finally found words, this is how our conversation went:

Me: 'Son, they will make 2 cuts in your brain so that they can put the shunt where it needs to go.' (His eyes almost popped out of his head!)
Austin: 'Really, mommy? They will cut me 2 times in my head?'

Me: 'Yes, Austin. They will. They are great doctors and this is how they put a shunt in someone's brain.'
Austin: (Sitting & thinking with his finger on his chin, looking somewhat puzzled... can you picture it?) Then, 'Mommy, this IS the part where I will be asleep, right?'

Me: 'Most definitely son, you WILL be asleep for this part. This is the surgery part.'
Austin: 'Mommy, where will you and Daddy be when they make those cuts? Will you be in the room with me and the doctor?'

Me: 'No, Austin. The doctors will have you in the operating room by that time. They don't let mommy's & daddy's go into the operating room. We will be with you until they wheel you back there and we will be there when you wake up. I promise you we will be there.' (My "mother's heart" was breaking for him at this point.)
Austin: 'Hmmmm.... I wish you and daddy could be back there with me in the... what was that called... the operating room?' (He sat and thought for a moment or two and then he spoke words that melted my heart!)

Austin: 'But, that's OK mommy, I know I will be alright. God will be with me in that room and I bet He will have angels in there too, to watch over me and to protect me.'

I didn't have words....

All I know is that it took the words of my 6 year old son to remind me that when we don't know how we are going to get there from here, ask God and He will not only accompany us on our journey, but He will be there waiting for us on the other side!! And, if we are truly blessed, He will place angels in our paths to watch over us on our way! I was reminded that many of you are angels in our family's path helping us get through this time!! Thank you for being there for us! We love you dearly!

I included a picture of Anna Grace & Austin with the World Of Coke Bear from our weekend outing 2 weeks ago! :0)

Yesterday, on April 21st, we visited the office of Dr. Jerry Oakes, a pediatric neurosurgeon, for the first time. Before we left that doctor's office, we learned that we will be visiting him at least once a year for the rest of Austin's life...

Dr. Jerry Oakes was honest, kind, and straightforward, but he had to deliver the news that Austin does, indeed, have hydrocephalus. Simply translated, 'hydro' means water and 'cephalus' means brain. He has 'water on the brain' that is not draining away from his head as it should. We found out that our bodies make 1 quart of cerebrospinal fluid per day. Our brains (mine & yours) drain the fluid off, but Austin's does not. Dr. Oakes asked several questions to alarm us. Among those questions, he asked:

• Is he developmentally delayed in school?
• What did your previous neurologist say?
• Are you sure you didn't see symptoms before February 4th of this year?
• Does hydrocephalus run in your family?
• Are you his biological parents? (This one was the kicker!!)

He asked all of these questions because he was simply shocked that we hadn't seen problems and symptoms in Austin before now. He said that the brain MRI images he just reviewed do not match up to a healthy 6 year old boy with only a few symptoms over the past 3 months. He was very surprised. That alarmed us, but then we realized this: God's touch on Austin's life is the only reason we haven't seen all of the problems that the doctor was asking about!! Only a supernatural, powerful, loving, gracious God can explain Austin's 'normal' health, given the swelling in his brain!

So, we had a talk with the doctor and asked many questions and listened to all he had to say. His recommendation and the best course of action is to put a shunt in Austin's brain. The shunt will be permanent and life-long. We will need to monitor it and he will have yearly check-ups with the neurosurgeon to insure that the shunt is still doing it's job. His surgery is scheduled for June 10th in Birmingham at UAB Children's Hospital. We will go over on the 9th for pre-op, lab work, and an anethesia consult. Dr. Oakes will make 3 incisions to perform the procedure- 2 in his skull/brain and 1 in his stomach. This 3 inch shunt along with tubing that runs internally down into his stomach will drain the fluid off of his brain for him.

It was a surreal day, but we know God is in control and He has gone before us EVERY step of the way so far, and June 10th will be no different. We know our God is going before us even now to prepare us for Austin's surgery and recovery.

Again, Austin broke everything down to 2 things that mattered to him. Let me share with you our experience when telling him about his upcoming surgery...

During the day yesterday, after we found out, we were careful not to let Austin see me (mom) cry nor let him hear us call family & friends to tell them what is going on. We decided to tell him last night about the surgery, after he asked us to please tell him what is going on. Joe explained the events of the past few weeks very simply and told him that the doctor we met today will perform surgery on his brain to fix the problem. Austin's first question was: 'OK. Daddy, hold on, will I be put to sleep for this surgery so it won't hurt and I won't feel anything?' Joe, of course, told him, 'Yes, son, you will be asleep so it won't hurt.' Austin was good with that and was perfectly fine to keep listening to his daddy explain things.

Then, Joe told him, 'Son, you won't feel well when you wake up and you will have to stay in the hospital overnight or for several nights.' Austin looked shocked & a little concerned and immediately looked over at me and asked, 'Where are YOU gonna be?' To that, I answered, 'Son, I am going to be right beside you, sitting in your room or I will be in your bed with you holding you if you need me to. Daddy and I will both be there in the hospital room with you the entire time.' Once we assured him of these 2 things, he was fine. He had no more questions and he is 'good' with the fact that he is having surgery in 7 weeks. Amazing!!

I am thinking to myself, 'Where ELSE would we be son but right by your side or holding you while you hurt or helping you while you are sick or scared? We wouldn't ever let you go through this alone, son.' I was surprised he asked that question, but he did.

And, then it hit me, how many times have I asked my Heavenly Father that question just before descending into a valley in life or while I was in the middle of a difficult or gut-wrenching time? How many times have I asked my Daddy, my Abba Father, 'Hey, where are YOU gonna be while I go through this very difficult time?' or how many times have I asked, 'Where ARE you in this mess Lord?'

And how many times did my Daddy, my Abba Father speak to my heart and say, 'I am going to be right beside you supporting you! And when the journey gets very painful and very tough, I will hold you and carry you through!' Don't you know He wonders why we continue to question Him during these times? Just like I couldn't believe Austin thought his daddy & I would be anywhere else, neither is my God going to be anywhere else but walking with Joe and I and carrying us through this valley.

I asked my Heavenly Father this afternoon, 'Where are YOU gonna be, God, on June 10th?' And His response was loud and clear, 'I am going to be right there with you my child and I will carry you through if it gets too painful!'

Austin's simple faith and simple belief system allowed us to see how BIG our God is and how faithful He is when we are facing a valley. Whatever valley you are facing, I challenge you to go ahead and ask God, 'Where are YOU gonna be?' I bet I know His answer...

We awoke at 5 AM this morning, after very little sleep, to take Austin to the hospital for his MRI. The morning went very smoothly, much better than we expected, thanks in most part to many prayers going up on Austin's behalf! Thank you all SO MUCH for your prayers for Austin & our family today!! Many of you have encouraged us more than we can begin to say.

Austin did GREAT this morning during the entire process of being put to sleep, going to get the MRI, and waking up. He has not done well before waking up from anesthesia, so we were very anxious about that part. He did very well and only felt rough for about the first 25 minutes when waking up, but he was calm. By the time we had been back home for about 1/2 an hour, he was back to himself. We could sense the prayers going up on his behalf the entire time! Thank you! Thank you! Thank you!

Also, we did receive a call from the doctor late this afternoon with the MRI results. Again, God has gone before us and prepared the way. He is faithful that way you know!! Though they DO still see the fluid build-up and pressure on his brain in 3 ventricular areas, the MRI DID NOT reveal any large mass or obstruction that could be causing the fluid build up and pressure. The doctor said that they saw nothing additional on the MRI to alarm them, other than a confirmation of what we saw last week. So, we are praising the Lord for that bit of good news!! Hallelujah!

Right now, we will wait 1 week before we see the neurosurgeon next Tuesday (04/21) at 10 AM CST in Birmingham. This is when we will find out more about our next steps and whether those steps include surgery to put in a shunt. Though we still do not have all the answers or reasons why, we are one step closer to finding out a resolution. And, our God already has ALL of the answers. We must simply trust His heart when we can't see where His hand is leading us. (Easier said than done sometimes.)

We are so grateful for amazing family and friends to lift up our son in prayer, as if he were your own! We love you so very much!! You are surely undeserved blessings in our lives! God is good all the time and all the time God is good! We will continue to wait on Him and praise Him while we wait. We indeed serve a God who can still move mountains!!

Over the course of the past 8 weeks, Austin has had episodes of throwing up and not eating and feeling rough for a day or so at a time. These 'episodes' couldn't be explained by a stomach virus or food poisoning or anything like that. We couldn't figure out what was causing them, other than a 6 year old getting sick occasionally. But, he has thrown up more in the past 8 weeks than we have seen in 3 or 4 years.

So, we took him in last week to check into it. The pediatrician recommended an eye exam first because she noticed something that alarmed her with his eyes and tracking things in his field of vision. His full eye exam last Wednesday showed that his eyes were fine. He doesn't need a prescription nor did they see any problems. So, the next step, before checking the stomach area and GI-related issues was a CT scan. That was scheduled for yesterday at T.C. Thompson's. We FULLY expected it to come back normal and then move on to the next test with a GI specialist. Well, we were shocked to get the abnormal results back. The CT indicates that there is increased pressure on 3 ventricular areas in his brain, meaning that fluid is building up and sitting on these areas causing pressure. His brain/body is not draining the fluid as it should. This is what could be causing what has been happening with him over the past 8 weeks. This has to be investigated further with an MRI and then a consult with a neurosurgeon in Birmingham, AL.

Our pediatrician scheduled an MRI for us at T.C. Thompson's. Then, they called the specialist in Birmingham to set up that appointment as well. His MRI is scheduled for next Tuesday, April 14th at 6:30 AM. It will be an 'MRI w/ anesthesia' since he is so little. They didn't have an appointment open until July, but our Dr. called and urged them to fit him in on their 'emergency cases' day, which is Tuesday of each week.

Then, they set up our first consult with the pediatric neurosurgeon in Birmingham, Dr. W. Jerry Oakes, for the following Tuesday, April 21st at 10 AM. He will review the CT scan images, the MRI images, as well as see Austin and then he will tell us what our next step is. We don't know what that step is yet. One possibility the doctor mentioned yesterday was placing a shunt in his brain to drain off the fluid. Needless to say, we were alarmed yesterday to get this news, but we have ALREADY seen God move in this situation and we see God's hand ALL over the situation in so many ways. We also found out yesterday that he has strep AND bronchitis. Poor child!!!! Bless his heart!!

Rest assured that we know God is in control and that His hand is all over this and He loves Austin much more than we do! So, while we wait, which is VERY hard for us- the waiting and not knowing is SO difficult- we will trust God's hand in all of this. As several of you have said to me in the last 24 hours, God was not surprised yesterday! He knew this was going to happen and He has made a way already. We just can't see it yet, which is the hard part for us. Austin's spirits are great!! If you ask him, he will tell you this:

'They took pictures of my brain yesterday and they need to do something to fix it and I am going to be fine! I have had surgery before and they just put you to sleep and it doesn't hurt when you wake up.'

He was singing the praise song 'Blessed Be Your Name' by Chris Tomlin yesterday when we got in the van RIGHT AFTER the doctor's appointment. That is SO GOD!! He was singing, 'You give & take away... so my heart will CHOOSE to say, Lord blessed be your name!' So, his spirits are great! To look at him, you wouldn't think there is a thing wrong with him!! Praise the Lord for that! We will be at the Easter morning service with bells on and Austin will be singing a solo with his sister. So, we will rejoice in spite of our uncertainty. We will continue to claim Psalm 91, which talks about 'abiding in the presence of God'.

Thank you for your time in reading this update and our family would covet your prayers right now for Austin's health and for our peace.