Year

Well, what can I say this year has put a lot of "years" on us. It certainly has been a difficult one but one thing is for sure, no matter what we have been through we have been blessed. Blessed by so many prayers said for Mason and our family, blessed by love, kind words, donations to help our family, messages of encouragement, food to help us get by, but most of all we have been blessed because we still have each other, ALL of us. There were many times this year when we didn't think that was going to be possible. So many complications. Josh and I still have our marriage and our love for our boys and our love for each other. God has carried us through every step of the way when it HASN'T been easy. And I know no matter what next year has for us that God will continue to be with us every step of the way. We have been blessed and we must remember that, no matter what may come. We thank Him for his provisions in our lives and for allowing us to be together this New Year's Eve when at one point in time we thought it was impossible.  But God is the "I'm possible."

Mason says Happy New Year! He had to go and get his synagis shot today. No fun!

The best New Year's eve yet spent with both of our boys. We love them so. We made Christmas cookies (since we didn't get around to that due to the stomach virus).

 Working with the cookie dough.

Mason even helped.

 Happy boy! He loves his sweets!

 Playing with the icing. 

We had dinner and then we got out sparklers to have outside. Corbin was a little unsure but will do anything as long as his Daddy is by his side. He sure loves his Dad and is going to have a hard time when he has to go back to work on Wed.!

We are thankful for all of you this year that have kept up with our story and have prayed for our family. You have touched our lives and God has heard your prayers. We look forward to continuing to share our story and blessings with you in 2013.

This is what it is about

Watch and listen. This is what Christmas is all about. Just heard this on Klove and it is unbelievable. So often we forget the true meaning of Christmas but this is it all summed up into one:

Quick update: We all got the sickness (except for Mason thank the Lord) but we all survived it. Mason has a lot of congestion and was given a nebulizer and albuterol to help get rid of it and is doing pretty good just having difficulty taking foods by mouth (thank the Lord for the gtube)! I will do a much more detailed update about Christmas later but just wanted to share this.

Perspective

As the days until Christmas come closer and my family still is under the weather and I get frustrated I still must remember perspective. Exactly as my mom said earlier today on facebook, even though this year has been a tough one we have been blessed. We have 2 sweet amazingly perfect little boys at home with us and we WILL celebrate Christmas when everyone is well (as we should celebrate Christmas every day of the year). I have always LOVED Christmas and celebrating it and have wanted to pass these traditions down to my children and look forward to doing this in years to come and God will get us through this time right now. We are blessed and are fortunate to have Mason alive and doing as well as he is doing! Below is a "guest post" from my mom, Cathy (picture taken by Gail Jones Photography).

It's all perspective......
This Christmas will be very different for my family. Right now Corbin is getting over a GI bug and still has a fever.Lauren Jump Matthews is staying down stairs with Mason in total isolation. Josh Matthews is staying upstairs and quietly comforts Corbin each time he heaves. All of our plans for a family Christmas dinner (although with oxygen tanks and feeding tubes) seem to be dwindling away. But there is a lesson here as well. Christmas is not just about all the bows, wrappings and cheery songs. December 25th is just another day on the calendar. We can celebrate ANY day. And we have so much to celebrate. The odds were so stacked against Mason even "being" this Christmas. And yet, I can hold him.....and look at that precious face......and rejoice. Maybe this Christmas won't be like we planned.....but we can still celebrate.....and look forward to next year.....and be thankful for the many many ways we have been blessed. There are 20 families in Newtown, CT for whose Christmas Days will NEVER be the same. So.....here is a big hug.....from my family to yours.......and a wish for a very blessed and Merry Christmas. Ours truly is! 

Prayers

Please pray for us as Corbin has the vomit flu and that no one else (especially Mason) would get sick. Thank you.

Follow up

We got a good report today from Mason's neurosurgery appointment. Tomorrow we are headed to the peditrician to follow up on his cold. He is coughing a lot and they just want to check him out. His oxygen requirements have stayed the same for the most part. Otherwise we are getting the boys ready for Christmas! They are excited!

Mason's version of Rudolph. (Red light from pulse ox).

Memories

We are enjoying this Christmas with our boys and love how involved Corbin has become at this age. He loves searching for our elf, Hermie and absolutely dances with glee when he finds him every morning. He can spot a nativity in no time when we are out and about. The other night my mom and I took him to see the balls at Friendly and then to see the waving Santa.

I remember this so vividly from when I was a child.

He was SO excited!

We also went to go see Santa. Corbin told him he wanted a jeep, bounce house, and a trampoline. And presents for Mommy and Daddy and Mason (sweet boy). 

And tonight we put the finishing touches on this years gingerbread house. Corbin had a blast decorating and even saved the candy and didn't eat any until he had permission (unlike Daddy). Here is the end result:

 Proud boys.

Follow up

We are pretty sure that Mason's vomiting was all due from his shunt draining excessively. Once they adjusted it and his head filled back up he seemed to be better and has kept his food down. He continues to take the majority if each feed by mouth only leaving 5-10 cc left. He is becoming interactive with me during feeds and will hold onto my shirt and watch me. We are going to work on social interaction and over stimulation with his therapy. We met with the CDSA today and he was fussy and seemed to get overstimulated easily. They said to consider him almost 1 month old considering his "adjusted months" have been spent most in the hospital. So we are hoping we will get some positive interaction and experiences now. Please continue to pray in these areas and for Mason to be healed neurologically.
We did get a call from Brenners today that Mason did test positive for the rhino virus so basically he has a cold. Treatment is still the same... Nothing. So we have learned that Mason is very temperamental with his shunt and will get very irritable, sling his head back in pain, and a new one:vomit everything. This is if it isn't working or if it is draining excessively. Atleast he lets us know!

Home Sweet Home

Enough said. Thanks for your prayers. 

Deja vu

Mason dialing up Dr. ("Uncle") Phil in the ED. 

Sorry I haven't updated but we are back in the hospital again. Prayers needed. Mason had some difficulty with spitting up his feeds (both PO feeds and by g tube feeds). It progressively got worse as the week went on to where he couldn't keep any foods down. My peditrician had recommended adding some oatmeal to his feeds in an effort to help with reflux. That didn't work so they sent us to Brenner's ED because they said vomiting is a sign of a shunt malfunction. CT scan showed shunt was draining great...almost too good and ventricles were almost collapsed. They turned the setting to allow less drainage again but Mason still couldn't keep foods down so they admitted us. He spiked a fever last night of 102 (he also was INCREDIBLY AGITATED at his IV and frankly because he was in the hospital getting poked and prodded and he received vaccines on Thurs) so now they are watching for an infection and did the whole infection work up--blood cultures, urine cultures, nasal swab, flu work up. Labs were good, CRP elevated at 77. I asked could that be due to vaccines and she said that is possible but not a lot of research is done on that. So now we are in a waiting game. Everything has looked ok so far. Prayers appreciated to get us through this and to keep us all healthy (I am starting to get sick). Certainly getting tired of going back and forth into the hospital. Thankful to have our boys though and no matter what we are going through we have our family and can hold them close. God be with those who no longer can not.

Quick note

Just a follow up from Mason's hearing test. He didn't cooperate the whole time but we got enough results to feel confidant that the right ear is ok and the left ear is not. That is the side with the shunt so we are not sure if it is a brain thing (which is probably the case) or an actual structural loss. We will follow up for another test in 3 months and talk with the neurologist about his thoughts on this. Prayers continued to be appreciated as Mason develops.

Hearing test

Mason's hearing test is in progress. Please pray for good results. Funny thing happened though, as she got started the fire alarm went off. Oh Mason, this is the story of our lives. You and your brother are going to make my hair fall out!

Firsts

Throughout this whole event we have experienced a lot of firsts (as you do with any baby). Some have been not so happy (like first surgery or first shunt revision) and some have been happy (such as first bottle or first time he rolled over). This week we have had several first: like first hair cut. This one really was not by choice but by surgeon's choice. Mason had SO much dermabond on his hair that is was a necessity in order to have a sterile space and to get it all out. Here is the finished product:

From this angle it kind of looks like a mohawk.

When we got home we had to equal things out...so we buzzed the other side. I was pretty bummed. Mason had a lot of hair. But it is already growing out and he does look pretty good bald. Another first we had today was nursing...actually from the real deal. I have been pumping the whole time through all of this so Mason has received breast milk. But today after he ate, I was holding him and he kept rooting around and smacking his lips so I figured it was worth a shot, and he latched on and started eating like crazy! For those of you who have breastfed you know that is not an easy task and needless to say I was shocked. He is really doing so well with his oral feeds too! We are pretty excited and very thankful. Your prayers are working!

And this little boy is being wild as usual. He is really into everything and is trying to waiver back in forth between being a big boy and being a baby (because Mason gets SO much attention). I will often find him in the bouncy seat or trying to get in the pack 'n play. We figured this would happen because it has definitely been a hard adjustment for him, especially with us in and out of the hospital so much. We sure do love him though and would appreciate your prayers as we all continue to adjust. We are hoping to stay put and stay at home for a bit!

He loves wearing his robe like Mommy. 

Thank you

We have been overwhelmed by the generosity of others through all of this and just want to say a big thank you. I wish I could write each of you individually but just know that we are so thankful and feel so blessed by each of you. You have touched our hearts and we are grateful.

Mason is doing great and recooperating from his busy week last week.

We are all home.

Mason was able to come home today and we are so thankful. Hoping to get some rest tonight!

Update

Surgery went well and we are so thankful! The shunt placement stayed the same and the tubing is placed in the heart. Everything looks like it is draining great, almost too good so if his head is still sunken in tomorrow then he will reprogram it to drain less. In other news that I haven't mentioned lately Mason is doing great with his bottle feeds and is taking full feeds or close to full feeds each time. We still feed him through the g tube at night so we don't wake him up but he is doing great! We are very thankful for good news and hopeful that this will fix the shunt problem! Thank you for your continued prayers!

Third times a charm (we hope & pray)

Mason's third shunt revision is taking place right now and started around 11:55. We are hoping this will be it for awhile. Dr. Couture's plan is to keep the same shunt placement but just change the tubing from his belly to his heart. So blessed to have him on Mason's team! I will update once we hear more.

Mason being taken back to surgery, hopefully the last one for awhile but we aren't really counting on it!

Surgery scheduled

Mason's shunt started leaking again this afternoon so it looks like surgery is inevitable. He was put on the OR schedule and we aren't exactly sure what time his surgery is because he has to coordinate with the pediatric surgeon in order to gain access to the heart. This time instead of the drain/tubing being put in the belly it is going to be put in the heart. The shunt is also going to be moved to either the right side or to the back of the left. We will leave it up to the surgeon to do what he is thinking is best. Please pray for success and for quick recovery. Hard to believe that this will be Mason's number 8 surgery and he is only 6 months old (and that isn't even counting other procedures).

I sure do love these boys. 

Day 4

We are still here at the hospital. Mason has been tapped off his shunt every day in an effort to keep any fluid from coming out his incision site so that the skin will heal. The plan is for him to be tapped again today and then stop and see if there is any more leaking in the days following. If it leaks again then that means Mason will have surgery to remove the shunt from its current location and place it in a different part of his brain. He will also take the draining tube out if his stomach and put it in his heart. Because Mason has had so much surgery done to his stomach it may not be the optimal place for it to drain and be absorbed due to all of the scar tissue. We are really praying this works and would love to avoid another surgery if possible. I will definitely keep you updated in the next few days. Thanks for your continued prayers.


Daddy and big brother came for a visit.

Hotel Brenners

So, we are back at Brenners again getting quite the view of the hospital (now on the 8th floor). Mason's head continued to leak so we came back in to keep an eye on it. The plan is to tap it once or twice a day  and give his head a chance to heal or another surgery to remove the shunt and put it in a different place and quite possibly place the lead for drainage in the heart. So I will be up here atleast for 4 or 5 days. Please pray that we come up with a solution that works so that we can be home for good!

Christmas parade

Today my mom kept Mason so we could go to the Christmas parade. We had a great time and I think Corbin consumed more candy than he ever has! He was on a sugar high for sure! Please continue to pray for Mason's head to heal. We have had a few drops of leaking here and there out of both sites and called and they just said if more starts coming out to come in. I really am praying this will heal and we know God answers our prayers!


Mason you will come with us to the parade sometime soon buddy!