Hello everyone-

Well, if you are getting this and wondering how we are doing, we are actually doing quiet well. Owen has started saying a ton of words and preschool has been a Great thing for him.  We couldn't be prouder of him.  Its so fun to have a conversation with him!! Which is great news.  Walking has been a challenge for him which we are hoping will change with upcoming events.  Which brings me to the next thing. Owen will be going through another surgery on Wednesday.  Not something that we want or wish to do of course, but neurosurgery believes that putting in a shunt to relieve the pressure build up will be good for him.  :( Yes, it's a bummer but it's a pretty easy.  We all should be back home on Thursday after one day in there hospital.  Which is a good thing.  

So information about what we are doing, we are placing a shunt in Owens brain to relieve pressure, so basically it's a drain that will run from Owen's brain down into his tummy. or as i like to call it a Brain drain.  

You might be asking how mike and I are holding up. You know, pretty well, we have actually known for a while just didn't want to admit that we needed to do something about it, But we really believe that it's going to be the best for Owen.

Other than that Owen is doing well, has a love hate relationship with his little brother, who is starting to walk. Owen pulls him down a lot!! But we do catch them playing together has to be the coolest things we have seen. Owen is not only going to preschool, which he loves, he is speech, PT, OT, Music, and swimming therapy.  I think he loves swimming and music the best.  It has been a journey for him but he has so much determination! it's great to see as his mom.

Please keep Owen in your thoughts and prayers this week for a quick recovery.  

The last thing that I really wanted to bring up is the 4th annual purple de mayo. Yes we are doing it again.  I am a super busy mom, so I am not asking for much, just that you  wear purple to show your support.  If you would like to share pictures I would love to see them, as I think Owen would get a kick out of it too.  Remember Purple de mayo is on the 5th of May. I hope that you all will make part. 

Please feel free to email me if you have any questions.

Thank you so much for all the love and support!!

2nd Birthday!

All,

Thank you for the support you have given Owen, Val, and I over the last
year. Please feel free to come celebrate Owens 2nd birthday and many
accomplishments. We will not be accepting gifts, but will have a Children's
hospital donation drop if you really wanted to do something. If you are
worried you won't know anyone... Just bring a friend.

Please try and RSVP via the Facebook invite or email Val at
valbrooks@gmail.com.

Thanks!
The Murray's

Merry Christmas and Happy Holidays!

Dear family and friends,

I hope this letter is finding everyone in good health and good spirits.  Mike, Owen and I thought that we would take an opportunity to share with you what has been going on in our lives over the past year.

2012 has been a hard year, but it seems to be getting better as we make our way into 2013. This year Owen experienced a stroke, diagnosis of infantile spasms, more than a dozen different drugs, injections, several months at Children’s hospital, and three major brain surgeries. I am at a loss of how to describe this last year to anyone so that maybe you would understand, so we just listed them.  I am not going to tell you how everything happened.  I am not going to tell you how hard this year was for us because this time of year is a time to celebrate, a time to rejoice, and a time to witness miracles.  So this year I am going to celebrate the positive things in our lives.

I will celebrate that although I enjoyed my previous job, I have a new one that allows me to be much closer to home. Mike continues to work and no I haven’t figured out what he does, maybe that will be something I do in 2013. Dora continues to lie on the coach as a coach potato; I think that we desperately need to give her some potatoes chips, a beer, and sunglasses for next year’s picture.  We are also very thankful for both of Owen’s grandmothers who take turns watching him every week.

Owen is a strong willed little boy with so much strength.  He has more determination to do something than I thought anyone ever could.  Owen has set out his own path on when he is going to accomplish things. We are excited with what he can do.  He is not the typical one year old, although he looks it he is. He is very much an independent little boy.  He is currently sitting up, starting to crawl, and learning to stand.  Physical therapy has been working hard with Owen to help him be interested in crawling and walking.  I didn’t think I would ever be so excited to see a little boy walk as I am now.  Owen has had an uphill battle these last few months but I am constantly reminded that he is my little boy showing off the miracles that he has given. 

Owens’s first birthday was very low key.  We really didn’t celebrate; we weren’t really in the mood to celebrate. Although we were out the Pediatric ICU, we were still at the hospital and it was still hard to really celebrate a millstone birthday. The doctors were amazing, brought us some cake and ice cream, and had an amazing dinner from Grandma and Grandpa Murray. 

On Sept 9^th Mike, Owen

and I made our wonderful way out the Children’s hospital.  We were so excited, 2 months of hospital food, and getting to go home, our home.  Since being home, our lives have changed again.  Owen as I said before has showed how strong he is.  He is sitting up without assistance, working on lots of tummy time, and is working on walking with PT’s help.  He has been talking up a storm almost like his world had been so quiet for so long, he needs to make up for all the lost talking now. We have gotten looks in stores; can you please keep your baby quiet? I look right back and smile, no!

We have much to celebrate this year, much to be thankful.  Although this year has been hard, I am constantly reminded of how amazing Owen is.  We have been surrounded with family and friends.  And if you have been a part of it, we can’t thank you enough.  If you haven’t I know that you have been thinking of us.  So thank you!! 

I am leaving this letter with a challenge, find and appreciate a miracle. For those of you, who feel sorry for us, please don’t; we get to witness miracles every day!  We are witnesses to miracles with every smile, movement, everything Owen does! We would love for you to find a miracle to witness, I pray that you will see them as we do. Merry Christmas! I hope that next year is a bright year!

Val, Mike, Owen and Dora

Happy Halloween

Well Hello everyone-

Wow, I feel like it’s been so long since we have written, we have noticed a lot of people are calling and wondering how we are doing. Well it’s been a crazy last couple of months. We have been keeping our heads down and working hard to get Owen through physical and occupational therapy schedules, along with working and figuring out where we need to be.

It’s been crazy. We are happy to report that the seizures although still there are much less than before. We went from hundreds a day to one a week. We have gotten rid of a drug that we started almost a year ago this month. Wow, I can’t believe that it’s only been a year; we have made so much progress in the last year and even in the last months. Owen has been showing his true character.

We ditched the NG feeding tube about 2 weeks after we got home. We then started focusing all our attention on eating food, that’s where we have been for a while now. It’s been pretty fun and hard all at the same time. But we were told to have fun with food, so we went outside and enjoyed a food fight. We then proceed to eating with a pacifier, which worked well. And just recently we have gotten Owen to eat without the pacifier.

Physically Owen has shown a ton of progress, been really interesting in being on his tummy, and is starting to show interest in crawling. Physical therapy is so excited about this to be honest so are mom and dad. It’s awesome to see. It’s great progress! It’s nice to see after everything. He continues to learn and talk a little, mostly baby word but there are times the words are clear. The other day PT asked Owen if he wanted to roll over and Owen said “no” it was really cute.

Well, I don’t know anything else, it been pretty quiet but busy. We really want to thank you for all your support over the last year. We are truly blessed to have to you have a part of our lives. You all have been so supportive and we can’t thank you enough.

Happy Halloween:
Val, Mike, & Owen

Dr. Seuss

Another EEG

Hello everyone-

Wow, it's been a busy last couple of days.  I wanted to write and give you an update, I know most people have been sitting on the edge of their seat waiting for this update.

So without further adieu, our Owen update:

Owen's surgery was scheduled for Wednesday August 22nd. When we walked down from the 6th floor to the pre-op room, everyone on 6 all wished us luck and did the cross your fighters sign, as we walked the hallway. You know that you have been there to way too long, when everyone does that. We were blessed to have the same nurse watch Owen during surgery, Erica, she even remember the names of the 3 animals go along during surgery.  We had 3 neurosurgeons talk with us, they all know us and we had a nice chat before we gave Owen Great big hugs and kisses.  

So, I know your next question, have we seen any seizures or spams? Well yes we have seen some spams, but it has been very minimal compared to the hundreds that we used to see. We are very hopeful that they are just residual and that it's just the brain healing.  Owen has been resting very comfortably and sleeping a lot.  Mike and I are okay with this as we want to make sure he gets better.  He is on a feeding tube only because we want to make sure he is eating. Mike and I have commented as we took our nightly walk that this surgery seems different, Owen looks great.  We are very hopeful for the future.

Friday was a very hard day for Owen, he had a seizure that was BAD! It was 45 minutes and emergency drugs were having struggles stoping it. Thanks grandma for supporting our Owen through this. Afterwards they hooked him back to an EEG. The EEG showed no other seizure activity. Yeah! But it showed abnormalities on the left side. They don't know what's going on... :(

It going to be a quiet weekend for Owen we are planning on making Owen comfortable and just relaxing.  We are excited to report, Owen has now gotten a tooth :) Owen turns one year on Sunday. Wow, what a year!

3rd Surgery

Hello everyone-

Here we are again, another day in Children's Hospital.  Don't get me wrong, I love that we have this place but I hate that I live here.

I don't know where I should begin.  I guess that's the harder part of writing email updates to everyone.  You just don't want to sound so depressing but you almost feel like that's all you really have to say sometimes.  So my apologies first,  I am sorry if this sounds really depressing.

• We continue to see seizures and spams.
• Owen has a fever for unknown reasons.
• We again are faced with our last surgical option, next week, Owen will have an anatomical hemispherectomy on August 22.

An anatomical surgery is different from his last two functional surgeries. They will be literally removing half his brain from his skull. So I know your next question is going to be...How does that affect Owen?  Fortunately, the brain is amazing and can actually overcome this. Many people who have the surgery turn out just fine. There is a recent story about a man who went to see his doctor for headaches.  The doctor completed an MRI and found that fluid had replaced almost his entire brain, he is walking, talking and has a family.

So Owen can overcome a lot. I am still  hopeful that Owen is going to do amazing things in the future. He is just going to half his brain tied behind his back.  If we can get the seizures under control Owen can be a kid and I can erase this year from my memory; like a bad dream.

Mike and I have started to get to know the people on the floor and in the halls, it's bad when the hospital coffee shop knows who you are and what you drink! We have got to get out of here.

On a positive note, Owen will be turning one on the 26th. Unfortunately he will be celebrating it here. Here are a few other positives:

• Owen is enjoying cuddling with Mike and I.
• Enjoyed pudding for the first time!
• Has been out of the room a couple times.
• Today Owen had amazing day.  He was awake and a wonderfully little boy. We needed that.
• He is getting much needed rest.

Well there's the good the bad and the ugly as most everyone likes to say.  I pray everyday that there is good news. But I am not giving up on Owen.  As always, thank your for your support, visits, meals and kind words. Each and everyone of your are blessing that have supported us so much.  I don't think we can ever say thank you enough.

Hugs from all of us here at Children's.
Val, Mike and Owen