Feeding team

I am requesting prayers tonight as we prepare for a big day tomorrow. We are headed to Chapel hill to meet with their feeding team to hopefully move forward in helping Mason take by mouth. We have been doing trials of baby food and he often will gag and throw up during feeds. We are praying they can help us move in the right direction to strengthen his oral muscles. He finally began with OT last week and that went well and she was encouraged with his skills. His gag reflex is just very sensitive! But it doesn't seem to bother him. He just keeps on going and smiling!

I love that this boy is so happy! He cracks me up! He is also so chatty now! And check out this brother love. I know the picture quality isn't great but I love their sweet faces!



Thanks for your prayers! I will update tomorrow once we know something!

Celebration

We continue to celebrate this year of Mason's life. My mom made a video of pictures from his life. I remember that this song (Never Once by Matt Redmond) spoke to me during the hard times of Mason's journey and today we sang it in church. I was reminded that God was carrying us and with us through everything we endured this past year. And now He is with us as we celebrate! What a blessing! Hope you enjoy this video. It brought back A LOT of memories for us!

Reflections at 1 year

Tonight my heart is filled with joy and overflowing with love. Joy for a wonderful year and love for so many sweet souls that have prayed and cried and prayed some more for our family and for our sweet child. A year ago tonight my heart was filled with many feelings. It was evident that the labor was not going to stop. I was hurting and frustrated with my body. Numbers and statistics were being told to us. The pressure of wanting us to make a decision...did we want any medical help present; did we just want to enjoy our last few moments together? It all seemed a blur. But somehow I had a peace. Even through all the feelings of fear and sadness. God was there. And has been by our families side through the events of this past year.

Born at 23 weeks; 1 lb. 5 oz. 

Tonight, I look at this sweet little baby who is wild and fiery with life, kicking and grabbing with yes, all 2 arms and 2 legs and my heart is full. We are so blessed. He came out fighting not giving the dr. any choice. He was fighting to breathe and crying. As the days and weeks went on Mason never gave up. And our prayers never gave up and most importantly we never gave up on God or Mason. My son shows me daily that prayers can work and that miracles still happen. His smile lights up our life. He continues to amaze everyone at his progress. Most of all he is the most happiest precious little (well now big) baby I know.

Mason at 1 year old (8 months adjusted)

Today we celebrate that Mason is alive. His odds of life were 10%. There were numerous times we heard: he's not going to make it or IF he DOES make it his outcome will not be good. We are thankful over a million times that our son made it. Our God defied the odds and our little boy is alive. Our God is continuing to defy the odds as He is working in our and Mason's life every day. Today, Mason weighs 18 lbs., continues to work on rolling over, has almost mastered head control and his overall core strength has improved tremendously. He is using both hands and continues to use his left hand more and more. He is kicking his legs like crazy and can put weight down on his legs. His vision continues to improve greatly! He laughs, smiles, spits, blows raspberries with us and is mimicking our sounds and beginning to say, "ahh da, ga, ka and numerous other noises. His swallow study last week showed he is safe on baby food but does need his liquids thickened to nectar (if he would ever decide to take the bottle again). We are going to Chapel Hill's feeding team for some help. He continues to still show no spasticity of flaccid movements in any limbs and all of this is a testament to our God. Thank you to everyone for continuing on this journey with us. This past year has certainly not been easy. But I wouldn't trade it at all because we are blessed with 2 wonderful boys. 

I could have never imagined this time last year that we would be laughing with our little boy as we tickle him. What a sweet and precious blessing he is to our lives. Hope you enjoy this video (if you can't view it on mobile search on youtube "Daddy's beard tickles Mason":

Under Construction

We have been doing some renovating in our house and both boys have been putting up with it pretty well.

Corbin helping with his drill, of course, in his underwear.

Mason, wearing ear protectors to keep out the loud noises!

Check out Mason's new trick. You have to listen really good for it (and he has greatly perfected it since this video) but he is trying to blow raspberries. It is his newest mission in life to do ALL. THE. TIME. We are excited though because this shows good cognition and communication.  He is so proud of himself at the end. 

Can't believe this little boy will be 1 tomorrow! Will be back again tomorrow for a bigger update on this boy!

Corbin is 3!

Yesterday our sweet boy turned 3! I can't believe it! It seems like yesterday he was just being born and now he is such a big boy. Here he is 1 day old:

Yesterday was full of LOTS of dr. appointments for Mason but we still managed to go to dinner at Bravo's where Corbin got his favorite there: shrimp (and of course the bread with dipping sauce)! Yes, he finally does eat bread but is still picky about what kind. He couldn't understand why his birthday party wasn't on his birthday, therefore he said it wasn't his birthday (the logic of a 3 year old). I can't get over how much he loves his brother and overall, what a sweet boy he is. He loves his family very much. This morning we went to get cupcakes to celebrate his birthday. He was pretty excited!

The more icing the better. 

Happy birthday boy!

So I decided I would have him answer 20 questions (once he got old enough to understand how to answer questions) on his birthday every year. I was pretty surprised that he could answer some of these questions but he did a good job. I was also surprised for some of the answers. So I am going to put his actual answers and then what I thought he would say next to them just so we won't forget (if it is different than what I thought). Our boys are growing up so fast!

Corbin's answers to 20 questions on his 3rd birthday (5/16/13)

1. What is your favorite color?  john deer green

2. What is your favorite toy? my jeep

3. What is your favorite fruit? oranges

4. What is your favorite TV show? Charlie brown; I am going to add in youtube tractor videos. He watches them all the time!

5. What is your favorite thing to eat for lunch? Chinese

6. What is your favorite outfit? shirt (typical boy answer right?)

7. What is your favorite game? play toys

8. What is your favorite snack? gummies

9. What is your favorite animal? fish ; ok I definitely thought he would say neigh neighs (horses).

10. What is your favorite song? Jesus loves me

11. What is your favorite book? an animal book; or really anything about tractors or farm equipment

12. Who is your best friend? Mommy; ok this one shocked me. I thought for sure he would say James.

13. What is your favorite cereal? Lucky Charms

14. What is your favorite thing to do outside? play with my jeep

15. What is your favorite drink? orange juice

16. What is your favorite holiday? Christmas

17. What do you like to take to bed with you at night? Juri, Tiger, alligator, Macaroni (a bear that Mamaw gave him), and dolphin; yes, there is a little room in there for him to sleep

18. What is your favorite thing to eat for breakfast? blueberry crisp

19. What do you want for dinner on your birthday? spaghetti or shrimp

20. What do you want to be when you grow up? a mailman

Corbin we all love you and our proud of the little boy you are growing into! We are blessed to have you in our lives!

Mom

Mom,
   We have truly been through so much together within this past year. To think a year ago last Mother's Day our lives were so different than now (which I wouldn't have it any other way).  Things changed quickly and it hit us hard and fast.  And you have been with us through it all. I don't know what I would have done without you, Josh, and God. You have been a constant supporter and encourager. I remember that night in the delivery room when we had NO idea what was going to happen, you told me that no matter what, we would get through it together. And we have.
   You have been there for me and have known what I needed. Without me even asking you would come over and clean my house, do my laundry, bring a meal when I couldn't even put a complete sentence together because I had been up all night praying/thinking about Mason and pumping. You have helped out with Corbin and help to keep him steady in an unsteady world of chaos with his parents being at the hospital so often. You have been there to help us through all the medical terminology when we didn't understand (which now we could all have an honorary MD behind our name, right?). You have encouraged when it didn't look hopeful and picked me up when I was low. You have listened as I voiced my fears and frustration and been to numerous dr. and ED visits,  pulling all nighters with me there.
   Words can not express or thank you enough but I guess I can only say now I understand why you would do all this for me. Because now I am a mother to 2 children. I will be there for them as you will always be there for me, no matter what they need.  That is what it means to be a mother. Mom, we love you and appreciate you for all you do. Happy Mother's Day.

Gigi and the boys

Progress

We have been busy and thankfully it isn't because we have been at the hospital! Between therapy and dr. appointments and living life with our 2 boys I haven't had a spare moment to update even though there is a lot to report! These 2 loves are what I am blessed to be with each and every day:

Corbin is such a sweet brother. Now I am not going to say that he isn't your typical boy who is rough or has dropped toys on his brother (even his head-yes, true story but let me add in that Mason was fine). 

But Corbin LOVES his brother and is so concerned about him and always trying to help me with him and always wants to hold his hand and give him kisses. Mason is also ALWAYS aware of where Corbin is. I think it is self preservation right now but he will cut his eyes towards him or look towards him when Corbin speaks. They already share such a special bond.

Both my boys are growing up so fast. It is hard to believe that next month Corbin is going to be 3 and Mason is going to be 1! This year has gone by so fast and so slow all at the same time. Hard to explain but I am sure you can understand. Corbin knows so much and probably a lot more medical terms than 3 year olds do like breathing treatments and g tubes and oxygen. He continues to amaze me by his kind heart and active spirit. He is his brothers biggest cheerleader. The other day, during one of Mason's therapies, the therapist was praising Mason and Corbin yelled from playing upstairs, "Good job Mason! You did a great job!"

In the past few weeks Mason has made small but noticeable gains. We have always been concerned about his left side (specifically his left hand). He was VERY sensitive to touch and would never use it most often keeping it back behind most of his body. He has been making improvements and first he started passing a ball/toy from his right hand to his left consistently. Then he started putting his left hand to his face and to his mouth (his right hand has been going there for quite a while). This past Friday, he was on his side playing ball with his right hand (video at the end of post) and his therapist turned him on the other side to give him a chance to use his left hand. In the past, Mason would try to get the ball with his right hand that was under him but this time he actually tried to use his left hand! Hard work and many prayers paying off!

Mason loves to put things in his mouth on his own terms.

Mason has also taken a BIG interest into trying to roll and is working really hard at it. A goal that I had given up on was him playing with objects during tummy time. I was pretty sure he would never do it and had told Josh that I just thought that was too hard for him. Well, the next day he did it while doing tummy time on the boppy and then while laying flat the other day he looked up and reached out for a toy! He loves to prove Mommy wrong already but I will take it! 

He has also become SO much more vocal! He is laughing and ooing and cooing and gooing. It is so great to see. He is still really soft when he speaks (we go to the ENT tomorrow so he can check him out) but I LOVE to hear his speech coming along. He is such a happy boy! He LOVES textures and so far the therapists haven't been able to find one that he won't tolerate. His vision also seems to be improving and he is much more in tune with sounds as well. His vision therapist screened him and for what he is doing (reaching/grabbing for items,etc.) he came out between 4-7 months (he just turned 7 months adjusted) so we were very encouraged!  His head control is slowly improving and symmetry is getting better slowly. He does numerous things to show us he is cognitively thinking. One therapist bought a toy and he was playing with it over and over and over again making it swing back and forth and she took it away. He kept trying to swing at it with his hand not realizing it was gone but then he did and he started crying until she put it back again. He loves to look at himself in the mirror and will put his hand on it and claw at it. When you try to feed him he will put both hands up at his mouth to keep it away which brings us to one of our downsides...

Feeding, yes, feeding has been a STRUGGLE! I am so thankful for the g tube because without it Mason would not be weighing in at 17 and a half pounds (which still only puts him in between the 25-50% for his adjusted age)! I have thickened and used different nipple flows and gone back to just the passy but we are still struggling. Mason has learned the connection between eating and throwing/spitting up. He also uses his gag reflex to protect himself. If he feels like his airway is being compromised he will gag and throw up. I have given him some baby food bananas which he tolerated ok but I haven't done a lot of that. I have asked for a referral for the UNC feeding team and we are going to try to get that going. Organization to suck does not seem to be an issue but fear of what happens during sucking. When he will take the bottle, as he is sucking he will pull farther and farther away until I give him a break and in his eyes I see fear. Also, Mason's clonis (tremor) in his feet have gotten worse. I am pretty certain that this is due to his head being pretty sunken in (due to excess drainage of the shunt). We go back to visit neurosurgery on Thurs. so I am hoping an adjustment will help this (as this has been a typical symptom when it was over draining in the past). We are SO SO thankful that so far, Mason does not exhibit spasticity or flaccid muscle movements. When he was admitted to the hospital the last time, the pediatrician following him came and examined him 2 times for cerebral palsy (the 2nd time was after she had taken a look at his MRI) and could not believe this was true and how well he was doing considering all the brain damage. We know who is in control though. Without God Mason wouldn't even be alive, much less doing as well as he is. And we continue to appreciate your prayers as we go through this journey. Our little boy is making great strides towards his recovery and for that we are thankful. Every day is a milestone and a blessing with both of our wonderful boys and we are so thankful that God has chosen us to be their parents. We continue to thank you for your continued prayers. 

Below are 2 videos of our life in action! 

Sorry for the weird camera angle but here is Mason playing his second FAVORITE game, ball. His first favorite was called get my oxygen off but since he is not needing any more he has moved on!

I LOVE this video! Corbin was "getting all of Mason's kisses" but at the end Mason decided to kiss him back! Sweet sweet boys!

A quick prayer request for tomorrow. A fellow 23 weeker who we just got the wonderful opportunity to meet last week is having brain surgery tomorrow at Duke to remove a fluid filled cyst. Please pray for him and his recovery as this is a more extensive surgery since they are removing a piece of his skull and he is likely to be in some pain. For more information on Pierce and his sweet family go here. 

Mason and Pierce finally meet!