So sorry I haven't updated sooner! We have had quite a busy couple of weeks and both boys have been sick off and on. We have had quite the slew of appointments as well. Last week Mason started PT and she was positive about his skills saying mainly we need to work on symmetry. He continues to not have spastic or flaccid movement (which is a good thing) but we need to do some strength and easing up the muscles. She was also encouraging about his CVI (cortical visual impairment) because she says he holds his head well and moves his head appropriately where most children with CVI have very weird head movements because they move their heads in odd ways to look at what they are wishing to see. We also made a trip to Charlotte to explore ABM therapy. I think that is something we will pursue in the coming months and I will post more about that later. We finished up the week to visit the neurologist and the NICU follow up team. Both were encouraged with Mason because he is making progress with development. His head and center control has improved some, he brings arms to midline and grasps at textures, he is smiling to voice, he is putting hands and objects in his mouth (and just this week has really started sucking his thumb), he will make noises as if he is talking with us, and most importantly he has not had anymore seizures. The plan is if Mason continues to not have seizures by June then we will actively wean him off his seizure medicine. He is doing well with his breathing and is on minimal oxygen and we can try him on room air as long as he keeps his sat. level up. He was doing GREAT until he got this cold! We are SO ready for spring! Overall, he is making progress and for that we are greatly. We continue to pray for healing and for our sweet boy to be a miracle in the making. He tries so hard and is so sweet!
Mason and my Ray ray. So glad to finally get a picture of them!
Mason LOVES Wilbur the worm!
Reading is hard work!
"But I will restore you to health and heal your wounds, declares the Lord, because you are called an outcast, Zion for whom no one cares." Jeremiah 30:17
"For everyone who asks and keeps on asking receives; and he who seeks and keeps on seeking finds; and to him who knocks and keeps on knocking, the door shall be opened." Luke 11:10
Well eye appointment today went ok. Eye is structurally working great but the dr speculates that what Masons problem is is brain related. His eye is taking a good picture but his brain isn't receiving the message. The prognosis isn't good. This can improve over time as the development of the brain improves and he did make a referral for therapy. So we definitely need your prayers. That therapy will improve and that Masons brain will develop and grow. Please join us in praying.
So I am FINALLY updating! So sorry but keeping up with these 2 boys have been keeping on my toes lately! But they are both doing great! Other than having a cold...
Mason is developing quite the personality. It is so nice to finally be able to see his personality and not have it covered by his head pain from the shunt malfunction. He is SO easy going and is pretty much always in a good mood. When he gets upset he will just let out a "waaa" and then it is over. He sleeps well at night through his bolus feeds and I have to wake him up around 7:30 to give him his first bottle. He always wakes up in a good mood and (when he is not sick) will smile and be happy. Corbin LOVES to help me in the morning and make him smile and kiss him on the head. He is a great big brother. Mason is also very sneaky. He pulls off his oxygen all the time and while we have gotten better at taping it on it is also very entertaining. This afternoon I was doing work around the house and looked down and noticed that he had his hand on his tube and was pulling his oxygen cannula off his face and I called him out, "Mason." He immediately stopped, took his hand out, and pushed his cannula back up to his nose. I SWEAR it was like he knew he had been caught! Before this last cold he was doing great with no oxygen and we had tried him without it and was tolerating it wonderfully. Right now he is on 50 cc which isn't much. If he doesn't have it he will just hover around 92 on his stats even though as I speak he doesn't even have them in his nose and he is doing fine. Oh well!
Sweet boy at bedtime!
Medically we have found out some more information. We had his hearing test last week and it is official: he does have a severe hearing loss in his left ear. Good news is the right ear is fine and the left ear is "aid" able. They were worried it might be something dealing with the processing and the brain but it wasn't which is really good news. I am so thankful that the right ear is good! This means he will get early intervention therapy to work towards this and they are probably going to fit his left ear for a hearing aid. The other thing that is concerning right now is his vision. Mason has periods where, when laying down, he goes cross eyed and struggles to open his eyes all the way. But it is only when he is laying down. When he is sitting up it is just fine and he looks around and looks at toys. He also does not track toys and I have really tried to work on this but it just seems very difficult for him. He might do it for a second but struggles for longer. We have an appointment with the opthamologist this coming Wed. so I am hoping he can help answer some of my questions. Those are our biggest concerns right now. Mason is doing well with his tummy time and holds up his head and is more "midline". He will reach for objects and grasps well and will initiate with his right hand. The left hand is more sensitive and he will resist more. He brings his hand to his mouth at times. So overall we are pleased and blessed and still praying and believing in a full recovery.
LOVE these pictures!
I am also constantly amazed by Corbin and his sweet and helpful nature. He is full throttle now, don't get me wrong but it has been so neat to watch him with Mason. He gives kisses to his brother on the head and loves to hold his hand. He always thinks Mason needs his toys and even though Mason may be laying there sound asleep, he will bring his toys and pile them up beside him or on top of him. One day I will get a picture! He is talking SO much and it is just unbelievable. He is SO grown up. Every morning it never fails he helps me take all of Mason's cords and monitor into the living room. He will grab them all and turn around and look at me and say, "Mommy are you ready?" We went on our first family outing since Mason has been home and introduced Corbin to Sonic. He just wanted a cherry after seeing the menu but he loved tater tots (but he called them tater tops). We are so blessed raising these 2 boys and I remember that no matter what are latest fear or concern is we must always trust in God. I read something the other day and I believe it is so true. "Let your faith be bigger than your fear". How true. May I live this every day.