Cochlear Implant Surgery

So its been almost a week now since the surgery and the swelling is going down and it is healing nicely. Thought I would finally post about the surgery since some of my family isn't on facebook.

We went to the hospital last Wednesday morning we were scheduled to start at 9:00am. They put us all alone in the big pediatric post op which we got all to ourselves since he was the only pediatric surgery that day. Landen was such a happy go lucky boy having so much fun even though he hadn't had anything to eat all morning. Somewhere around 9:15 they came and told us that the surgery before us was running over. The wait just kept getting longer and longer. Landen held it together pretty good until the last 15 minutes before he went back. It wasn't until 10:00 that they finally got him into the OR.

We were expecting a three hour surgery maybe three and a half that is what the surgeon scheduled out. My brother John and his wife came to sit at the hospital with us since they are visiting from Germany. It was nice not to have to sit alone and wait while we watch silly TV shows and try not to think about our baby boy.  My brother Isaac showed up not to much later with his family. Then my sister and my parents. Thank goodness they gave us the big room cuz we kept growing. Time for me just dragged and half way through they let us know that the surgery was going well but longer then expected. So it was more and more waiting.

The surgery ended up going almost five hours. I was so nervous I wanted to see him so bad. It seemed like forever before the doctor came to see us. He explained that it was the toughest cochlear implant surgery that he ever did. Landen's cochlea was turned in an usual way making it harder to get to. Plus his facial nerves were not in the usual place so he had to drill closer to them then he expected so he had to go slow so he wouldn't damage the nerve leaving his face paralyzed or partially paralyzed. But in the end it was a very successful surgery. They got it all in place and had 100% insertion into the cochlea.

We went back to our waiting for Landen and it seemed like they would never bring him back to us. The doctor came to talk to us again and said that Landen they wanted to admit Landen into the hospital possible over night just to watch him. Although most kids go home after a few hours they didn't want to risk it by treating him like any normal child they were going to keep him. They wanted him to stay till six and then make a decision on if he should stay overnight. So we didn't get to see Landen right away.

We moved up to pediatrics to wait again... eventually the rolled him in an hour and half after his surgery had ended. We found out that he had throwing up in recovery. Poor guy looked so miserable. All my family got to see him and we settled in. At six we made the choice to keep him there overnight. I stayed with him all night it was a long night and he was in a little of pain but by morning he was looking better just not eating. We waited until noon and went home.

Since then he had done great it wasn't until Friday afternoon that Landen finally got out of bed and ate some food. By that night he was up and back to his normal crawling and playing. The stitches come out on Friday and we activate his equipment on the 27th. That is when he will finally be hearing us all again!

Ready for Surgery

Here I am the morning before surgery finding it hard to sleep I decided to blog... I still have a few more hours until I have to wake Scott and the boys up but I'm getting my pre-surgery jitters out. I have been through a ton of testing and imaging with Landen all needing various sedation or anesthesia so I know he does well. But you can't help as a mother to still get a little nervous every time they take your little one back into the OR without you. I'm really excited for this I have worked endlessly for Landen to receive his cochlear implant and its finally time!

We have been so busy lately between CI stuff and getting him re-established with many of the doctors down here. Last week we meet with a new geneticist at Primary Children's who was so nice and seemed to know everyone. Including our geneticist in Arizona, Dr Zellweger whom the PBD spectrum is named after, and Dr Braverman who we see with the GFPD he knew when she was just training in genetics. We really enjoyed meeting him and he has already gone above and beyond in helping find resources answers to some of our questions.

Yesterday Landen got a new set of braces his old AFOs still fit but we were not getting the results we wanted with them. I had previously discussed with the OT in Flagstaff that there might be a need to put him in a taller brace since he was hyper extending his knees, walking on his toes and leaning back too far when he tried to walk. The OT we see now in Logan suggested the same thing. He is really good at explaining why Landen's needs things and exactly how it will help him. We agreed and fitted him for a new braces and we picked them up yesterday. The manufacture didn't quite fit them right and they are too tight and already are causing some red spots and irritation on his feet. So we are actually getting new ones made and only using these ones to get him use to the idea of the taller brace. I love how as soon as we put them on we could tell a difference. He stands straighter and the few timid steps he took were heal to toe instead of toe to hill which is what we were going for. They are also at a different angle because he spends so much time with his toes pointed he was loosing some of the range of motion in his ankles and this will force his feet into a position that will stretch the muscles and prevent the tightening we already see a little of.

Also yesterday he was fitted for his first adaptive stroller. This is a stroller we are getting through our insurance company that will be able to fit him and his needs for many years to come. We no longer need the double stroller and his poor little feet practically drag on the ground in the single stroller we have. Plus his school has requested it since they have to carry him from place to place if he refuses to use his walker. Its tiring I know cuz I do it! He is so small yet he isn't small anymore... if that makes sense.

I look at Landen two different ways sometimes I guess depending on my mood. Sometimes I look at him and see how big he is and how much he has grown. Looking back at pictures a year or more ago and compare him to himself. This is when my heart swells and I'm so proud of him! What accomplishments he has made and how wonderful it is to see him grow! Then there are the times I can't help but compare him to others. Mostly Brayden who has now slightly outgrown him and other four year olds. The he is so small... I really try to avoid this but sometimes its hard. Especially being around friends who have four year olds. People I was pregnant with and I was so excited to see our kids grow up together. I see them running and dancing and playing and going off to school. I see them interacting with their family and making friends knowing I will never have that kind of interaction with Landen. Usually it doesn't really bother me Landen is Landen and I love him. But every once and a while I can't help but feel a little jealous or heartbroken over missing out. Today is not a sad day though today is a happy day. Today is a day where I'm so proud of my little Landen! I'm proud of my family and my husband. It has been so much work getting here. I have worked through frustration and stupidity and my own tears to get to this point. My little Landen is getting his cochlear implant and in a few weeks (the 27th and 28th) they will be activated and he will be able to hear! Can you believe it! What a miracle this is for our Landen. I know it sounds dramatic but this will change everything! It gives him one more way to experience his world and he has so few ways now.  I love my Landen! I will post as soon as I can about the surgery but now I think I will try and grab one more hour of sleep or maybe a relaxing bath.