December: We had family come into town for Christmas and it was a pretty busy month. At one of the neurosurgery follow ups we had decided that Colton needs a molding helmet to help his head shape a little better. If Colton doesn't get this helmet then most likely his bones would fuss early and he would need reconstruction surgery on his bones, we are all for anything that will prevent another surgery to Colton later on. It's been a real struggle trying to get our insurance to cover this helmet. We were denied by tricare at first and now we are in the middle of an appeal. But all in all it was a pretty good month. Colton had a blast during Christmas and even tried to pull some of the wrapping paper off his presents with daddy's help of course!
me and Colton- Christmas Day
Chloe, Colton and Kaylee Christmas Eve... hard to get a picture of them!
unwrapping presents
January: Our family left on pretty early in the morning January 7th. At about 11:30pm January 7th Colton woke up screaming.. screaming like I have never heard him scream. I didn't really think anything of it at first just tried feeding him and putting him back to bed. I fed him and he seemed to settle down and when I laid him down he woke up again crying, so we changed him and fed him so more and tried to lay him down and again he woke up crying. After doing this over and over again for a little while I thought why isn't he going back to bed. I figured it was just teething since Colton had been grumpy for a few days before then and seemed to be teething drooling.. a few minutes before 1am after Colton had been crying and crying for about an hour he all of a sudden started projectile vomiting everywhere. It was a lot, I have never seen with any of my kids any throw up so much, it went about a foot and cover me, the bed and himself with throw up. I knew something was wrong... Brad felt the back of Colton head, where his soft spot is and it was hard and bulging out a little. I knew, I knew that his shunt had malfunctioned.. And off we went to the hospital, I have never driven so fast the the hospital before. I know with shunt malfunction that acting quick is important. Colton throw up again in the car seat on the way to the hospital, in the car seat walking into the hospital, while trying to get his vitals and again when they gave us a room at the ER. Colton got rushed back and into a CT scan.. then his neurosurgeon came to talk to me and told me that Colton shunt had pulled out of his ventricle and that he needed emergency surgery because his shunt wasn't draining and she could already see his ventricle building up with fluid. 4 hours after we got to the ER Colton was back into surgery. It was so scary.. something I knew could happen at any time. I knew his shunt could malfunction and was aware of all the signs to look out for. I thank Colton neurosurgeon so much for moving so quickly in getting Colton into surgery.. She has now done 2 life saving brain surgeries on Colton and I am so thankful for her. Thanks to her my son has a chance at a life and he would never get if it wasn't for his shunt. It's scary to know that this shunt is keeps my son alive. Colton got discharged from the hospital the monday evening. He really struggled with pain the day of surgery and the day after. It was so hard to see him in so much pain.
fresh out of surgery
a visit from Daddy
poor buddy was in so much pain
finally feeling up to playing a little
This is how I spent most of my weekend. By Colton side.. I love this little man so much. He is such a strong little boy and such a little fighter.
The rest on January was quite a battle with tricare to try to get them to cover Colton molding helmet. and we still don't know if that are going to cover it. Colton shunt is doing very well and draining great and healed up really well. He now has a programmable shunt that is set at 1.5.
Colton CT scan the night he went into surgery. His brain has expanded so much! we are so blessed and just so thankful!! Such a miracle!!
January 31st Colton went in to get fitted for a Molding helmet. Whether our insurance covers it or not this is something Colton really needs so we are getting it for him.. It will take about 2-3 weeks for it to come in. Then after he gets it we will need to go in once a week to get him measured and make sure the helmet isn't putting pressure on his shunt.
ready for the casting
Cast on and trying to dry a little before they take it off
all done.. and he wasn't happy about all this! Cried the whole time!
February 1st- Colton had an ophthalmology appointment today. He got his eyes dilated and they took pictures of his eyes. He needs glasses now too. His vision is within normal range for his age but it's on the lower side. And the pictures of his eyes showed he has Optic Nerve hypoplasia- his optical nerve is small then the average baby for his age. Right now his optic nerve is performing at about 60%. During this appointment his doctor was talking to us about in the NICU when she came in to look at Colton eyes for the first time how they went every direction.... up, down, sideways and just all over the place. She told us that then she really didn't think Colton would make it long (every doctor thought that) and how she thought Colton wouldn't ever see and look at you and know you are there. She is very happy with Colton now, he can see and tracks and knows you are there. HE CAN SEE! I am just so happy with every thing... Colton is doing amazing! He is such a little miracle. PRAISE THE LORD! All of our prayers work! Not only is he here and doing well but his is excessed any expectation any doctor had for him! It was hard today to hear his doctor say she didn't think he would make and and probably never see, but such an amazing feeling to know how far he has come!!
waiting at the eye doctor
Colton you are just amazing and I love you so much. Thank you God for giving him to us and thank you, thank you, thank you for letting him live and for having him thrive!!!!
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