Monday, April 22, 2013


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!