One year!

31 01 2013

IMG_1318[1]When you look at this picture you wouldn’t think Mason has any health issues, you wouldn’t think he has tumors on his heart, skin and brain or that he could get them on his kidneys or even his eyes. You wouldn’t think that a year ago Mason was having seizures and that we had to call 911 where he was taken by ambulance to the Johns Hopkins ER.  Later that same day he had one  that lasted over 15 minutes long.  15 minutes feels like an eternity when as a parent you feel like you can’t do anything to help.  All you can do is watch and wait for it to end, it’s absolute torture. When you look at Mason you see a healthy “big”, strong boy because he is, and we believe God is doing a miracle inside of him and healing him of this thing called Tuberous Sclerosis.

Today is a day of celebration and praise!  It marks one full year of Mason being seizure free.  Around Christmas 2011 Mason started having seizures again and we began fine tuning the dosage on his meds to get them back under control.  It was a very emotionally trying time for both Crystal and I, but we had faith that things would get better.  Mason had a stretch from December 28th through January 21st without a seizure and during that time we thought everything was under control.  He had at least one seizure a day for 10 days. I remember very clearly both of us being pretty broken one night about it when we got a voice mail message from a very good friend who recorded our small group praying for Mason and our family. It’s so humbling to hear people truly pray for you with a heavy heart, we felt like we were there.  Crystal was holding Mason just balling crying as we thanked God for caring so much. The next day Jan 31st, we woke up with such a peace knowing that whatever happened God was in control and He will equip us with whatever we may need to be the parents Mason needs us to be.  That day January 30th 2012 was the last time Mason had a seizure!  Praise God!  Crystal and I are very thankful and humbled by all the people who pray for Mason each day, and every day that goes by that Mason doesn’t have a seizure we thank God for it before we go to bed.  We are thankful for a great Neurologist, and for meds that are proven to work, but we are more thankful for a God that answers prayers.  We are sinful people and don’t deserve the Grace that is being poured over our son, but we are so very thankful for it.  We pray that God will continue to work in Mason and in us and that he will continue to pour out his love and grace on Mason.  We know that Mason isn’t guaranteed anything, just like we aren’t, and we know the only way to overcome any other bumps in the road we may encounter along the way is with God, because without him we would of been lost in the times when things were going wrong.

For now we simply focus on our amazing son and the gift he has been to us.  We ask you all to continue to pray with us each day that Mason won’t be affected by the TS and that he will continue to grow and develop like any other child.  We will continue to give praise to God for everything that happens in his life.  Thank you again for your love and support to us and our son, we appreciate everything that everyone has done for us.

God Bless,
Chris & Crystal





Thankful

28 03 2012

Crystal and I knew before Mason was even born that he would be a great gift to us.  But I don’t think either of really knew how much of an impact he would have on our lives.  I don’t think anyone really knows for sure how much a child changes your life, and in so many ways.  I can’t speak for Crystal specifically but I know without a doubt I am a different person because of Mason.  Never in my life have I cried like I did the day he was born, and never in my life have I felt such overwhelming joy.  I’ve never been a very emotional person, but since Mason has come along that has changed.  I get choked up sometimes just thinking about him, or looking at a picture of him.  I am forever changed because of him.

In 2 days time Mason will have gone a full 2 months without a spasm!  His last one was on January 30 which is the same day that our small group lifted him up in prayer.  We know that prayer works, and we know that a lot people lift him in prayer daily and we are incredibly grateful for that!  What prompted me to write this blog is how blessed we are that Mason is doing as well as he is.  He is developing normally, he is way ahead of the curve in height in weight, and he is an all around great baby.  Infantile Spasms are very hard to control, but we have been fortunate enough to keep them at bay for the most part, and we are incredibly thankful for that.  Our prayers now are that he outgrows the Spasms, which typically happens around 2 years, and that he won’t develop any other type of seizures.  We continue to take things a day at a time and just remember to thank God for every good day he has!

One thing I have always told the kids in the youth group at church is that whenever something bad happens you can usually look back on it and find something good that came from it.  About 8 weeks ago I injured my back lifting weights at CrossFit.  After 3 weeks of trying to fix it on my own I finally went to a doctor and found out I had a bulging disc with a annular tear.  Before Mason this would of been the end of the world for me.  I was very much into all things health and fitness and CrossFit was my outlet for both.  I am just now slowly transitioning back into working out, and although I hate being out of shape and not working out,  I have been able to spend a lot more time with Mason than I would have if I had still been working out every night.  I’ve learned that working out isn’t the most important thing anymore.  A very wise woman told me once that “You never look back and wish you had spent less time with your kids”.  I have all intentions of getting myself back into shape and working out, but the amount time and effort I put into won’t be the same.  Trying to be an elite athlete isn’t as important as spending time with Crystal and Mason.  I would of rather learned the lesson without the injury, but who knows how long it would of taken me to learn it without it.

 





God is funny that way.

22 12 2011

Over the last few days I’ve had a lot of time to reflect on things and one thing that has popped up multiple times is how I have always been drawn to the book of James in the Bible.  I can remember the exact time and place that I first read it and I remember liking it so much that I read the whole book in one sitting.  That was over 10 years ago and since then I have taught a few lessons to the kids in the youth group at church based on the teachings in that book.  Taking it straight from the book itself it starts out with:

2 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.

At the point in my life when I first read that I can honestly say I had never had anything major happen to me that I had to persevere through, but it still resonated with me, I just didn’t know why, until now.  God is funny that way I guess…  I’ve read this book countless times in the last 10 years and I never get tired of reading it, and I can definitely say that having these words stored away in my brain has helped immensely with all that we have gone through with Mason.  When I’ve read this in the past I always thought that I would have to persevere through something that happened to me directly, whether it be injury or sickness, I never thought it would be my son.  I know that through perseverance I will be a better man, a better father, a better husband, and a better christian, and I think that is what God wants.  No matter how bad things seem when you’re going through them, there is always something positive that you can take from them, sometimes it just takes time for it to be revealed to you.  I know in my heart God has great things planned for my son and in a very short period of time he has reached the hearts of so many and I don’t see that stopping any time soon.  In the mean time Crystal and I will persevere through whatever trials we face leaning on God for the strength that only He can provide for us and trusting in His will for our son!





A bump in the road

22 12 2011

In a perfect world Mason would grow up with no health problems, get married, and have 2.5 children.  Unfortunately we don’t live in a perfect world and we all know that.  Thankfully Mason was diagnosed very early with Tuberous Sclerosis and Crystal and I were educated on things to look for.  Right before bedtime on Monday night Crystal and I were putting Mason down and we noticed what we thought was a Infantile Spasm, which is a type of general seizure that is specific to Tuberous Sclerosis.  I had Crystal grab her phone and start video taping and he had one more.  I then immediately called his TS Doctors cell phone to see what we should do, and also video texted and emailed her the video.  Gotta love technology!  This was our first real bump in the road along our journey with TS since he was diagnosed.

Crystal and I then spent a good amount of time in Prayer that night and attempted to sleep.  The next day Mason got up like normal ate his breakfast and went over to Grandmas.  I received a call from Dr. Gipson and she advised us to take Mason to the PEDS ER at Johns Hopkins.  I picked Mason up and Grandma told me she thought he had a couple more spasms at her house right before nap time.  So off we went to Hopkins.

Upon arrival we checked in and were put in a room where we waited, and waited, and waited until some Doctors started rolling in and we answered the same group of questions over and over again to each Doctor that rolled through.  We saw Neurologists, Pediatrics, and so on.  In between Doctor visits Mason had a cluster of 4 spasms, two of which we got on video.  Getting it on video saved us a bunch of time because instead of repeatedly describing them to every doctor we were able to just hand them the phone and show them the video.  Eventually we were checked into a room so that Mason could get an EEG in the morning.  At least that what they told us.

Mason had some more spasms through the night and into the next day and we were stuck sitting around waiting for the EEG to get done basically the entire day.  Since Hopkins is a teaching hospital they took advantage of the opportunity to bring a whole slew of Doctors through to check him out.  Mason didn’t mind at all and he took it in stride like he does everything else.  Finally around 4:30 the EEG tech showed up and he did a 25 minute EEG.  So we were there for 26 hours so they could do 25 minutes worth of testing on him.  Not the most efficient use of time right?

At one point in time during the day Mason had a cluster of 10 spasms while Crystal was holding him and while it bothered me a lot, it didn’t have a big impact on me til later.  A couple hours later while holding Mason I was overwhelmed with emotion and I lost it a bit.  I had a similar moment after I found out Mason had tumors in his heart at AAMC.  I guess it’s just the way I deal with things, I have my one moment of weakness to get it all out and then I go back to being the strong one.  It’s very difficult to see your child going through something and know that you have no control of what is happening.  I want the absolute best for Mason and I want to do whatever I can to provide that for him.  But in that moment I couldn’t do anything but love him.  It’s very humbling and very difficult to deal with.

The one bright spot in all of this is Mason’s TS Doctor from Kennedy Krieger.  Crystal and I are convinced that she is an Angel sent to us just to take care of Mason.  She isn’t just a Doctor, she is a caring and loving individual who we feel wants the best for Mason just as much as we do.  She has given me her work phone, cell phone, and email and encourages me to call her whenever I need to.  I don’t know ANY Doctor that does that.  She even responds to Text messages!  She spent hours with us answering questions, going over treatment options, and just being there with us.  She also did her best to help get the people at Hopkins moving.

For now we are home with our precious baby boy and have given him his first does of Anti Epilepsy Drugs (AED) and now we just have to wait and see how things progress.  More updates to come…

Thanks for the prayers!





Times like these…

16 12 2011

I have a lot of things going through my head right now, and sometimes writing or in this case typing them helps.  I made the mistake of reading a support page for Tuberous Sclerosis on Facebook today, and it took my mind from the positive “Mason is going to be fine” to the “what if” side of things.  There is so much uncertainty with this disorder and things can change at any time.  Mason has been amazing for the last 4 months and is doing everything a 4 month old baby should.  By looking at him the only thing that would tell you he is any different from anyone else is a couple white spots on his body.  He has been such an amazing baby so far too, he sleeps great, eats great, hardly ever cries or fusses.  Crystal and I are just so blessed by him!  It breaks my heart to think that anything bad could happen to him, and it breaks it even more to think that if something does happen I have no control over it and there is nothing I can do to “fix” it.  As a man I’m a “fixer”.  I want to fix everyone’s problems, but the truth is I can’t.  It’s hard for me to accept that.  All I can do is trust that God knows what He is doing and that He has a plan for Mason’s life.  I have no question that Mason is going to effect many people.  He already has in so many ways.





Mason 7 week update

23 09 2011

Sorry for taking so long to update everyone on the little man, but like they say “time flies when you’re having fun”. It’s hard to believe it’s been over 50 days since we we’re blessed with Mason. The biggest highlight I can provide for everyone is that Mason learned how to smile earlier this week and Crystal has been spending some time trying to get a good picture of it. Other than that things have been pretty uneventful (which is a good thing). He had a check up at Kennedy Krieger a couple weeks ago and everything was normal. The Doctors there absolutely adore him, which is to be expected. We go back in January I believe and he has some other follow ups in October with the Cardiologist, November with Neurology, and January with Genetics. I’ll try and do a better job of keeping everyone up to date with things, work has just been really busy, and when I’m not working I’m with him and Crystal.





Friends and Family, and the Nurses and Doctors.

9 08 2011

Crystal and I just wanted to take say that we were overwhelmed by the outpouring of love and support that we received from our friends and family.  To all those who came to the AAMC for his birth, to the visitors the next day, and to the people who sat in the cramped waiting room at Hopkins, we appreciate all of you.  We’re also thankful for all the people who offered to feed the cats, mow our grass, or bring us food, and even went as far as to say “whatever you need”.  A lot of people stepped up in big ways, and even something as simple as the encouraging words you posted on the blog or on Facebook went a long way.  We also know that many of you spent time in prayer for the family and they were felt.  I had a peace about things after my initial break down and I will continue to be positive.  Everything is in God’s hands and we trust in His will for our little guy.

Even though the staff at AAMC and Hopkins may never read this we still feel the need to thank to them.  The nurses at AAMC were very friendly and compassionate women.  Mel, our nurse the day Mason got transferred even shared a few tears with us when we found out the news.  She also helped to encourage us that he was going to be ok.  Sarah, the nurse that helped deliver Mason was great, as were all the other nurses we had during our stay there.  At Hopkins were fortunate enough to have the same nurse for most of our stay there.  Here name was Jackie and she was extremely helpful in making us feel comfortable and she took great care of Mason.  During our stay there we met many of the nurses there and all of them were great people.  The majority of the Doctors we met were very compassionate and all were willing to answer the large amount of questions that I had ask, and all of them commented on how cute baby Mason was.  The Nurse practitioners did their best to try and get all the tests scheduled and done so we could go home and we appreciate that greatly.  We want to thank Nurse Jen for all her help as well and for seeing us off on our voyage home.  While she was only Mason’s nurse for a few hours, we were able to talk to her a lot since she was there 3 out of the 4 days we were.  In short the NICU unit at Hopkins is awesome!