So it wasn't an eventful week though it feels like it was. I forgot how much work therapy and doctors could be. First off back to therapy! Landen went back to his first OT in a month last week it went really well. Sarah the OT did an evaluation/update on Landen's goals. After doing her evaluation she informed me that she is noticing a great improvement in his core strength and a slight improvement in his arms and legs. I give the credit for the core improvement to the therapy ball. Landen spends hours up on that ball just bouncing and bouncing. He would go forever if Mommy or Daddy didn't tire out! He is learning the walker really well also. I love going to Kingman there are so many things that they can do for him in that gym that we just couldn't do at home! And they are making improvements they now have a permanent place for the ball pit meaning Landen can have OT in the ball pit every week if he wants to. Both the boys went and it was so fun I couldn't help but snap a few cute pictures of the boys playing in the pit.
Tuesday we went to Flagstaff to see if there was any improvement in Landen's ears. The mineral oil treatments did the job in the left ear but not the right. The audiologist tried again to get the wax out herself but his ear canals are just too small for her instruments. He was scheduled to see the CRS (Children's Rehabilitative Services) pediatrician and PT so that we could move forward on getting Landen a walker of his very own. Dr Austin is a wonderful pediatrician who has been practicing for what must be forever and he was able to remove the ear wax. He was really good at it too he was able to immobilize Landen without working him into a complete panic and remove the wax all by himself. It was gross to see a pea size glob of dry wax come out of those little ears. But with the wax removed we were able to make new molds for Landen these ones will be green and yellow!
The PT was a wonderful guy as well he is one I haven't seen there before but he agreed that Landen would do well with a walker and was even able to make some heel inserts that keep Landen from leaning too far back when he tries to walk. Its going to take some time to get the walker because in the state of Arizona a child like Landen who receives disability insurance must have multiple sate insurances that cover only parts of his disorder. Our private insurance is covering part of the walker and his two state insurances are fighting over who doesn't have to pay for the walker. But CRS is now sure that they are going to pay for it and now has to submit paperwork and then we must wait for the walker to come in. Sometimes it feels I spend 90% of my life filling out paper work and signing my life away to every one. But it looks like it has all been worth it Landen is finally getting everything he needs.
The best news of all Landen has gained weight! He is now 24lbs 9oz meaning he has gained almost 2lbs in the last 6 months considering he has only gained 4lbs 10oz since his first birthday the last two so quickly is so amazing! Its no wonder with the way he has been eating lately. Landen for the first time is out eating Brayden! I forgot to write down his height so I can't tell you exactly how many inches he has gained but I know he has gotten a little taller.
Now we are looking forward to our Omaha trip at the end of the month and August 8th will be Landen's birthday!!! Which also happens to be the first day of school here meaning the day Landen turns three he will start receiving in home services as well as out patient in Kingman!
Shortly after his second birthday our Little Landen was diagnosed with a Proxisomal Biogenesis Disorder (or PBD) a rare yet fatal genetic disorder. It hasn't been easy for us to share and this site has been created to help us keep everyone updated with doctors news, information and what is going on in our journey. We know we have tons of family and friends support and love. We hope and pray that we are blessed with many more years to watch our sweet baby grow!
My Little Landen
This blog has been created to help others keep up to date and follow our journey. I will post as often as I feel there is new news in his condition or our family be it good or bad.
Wednesday, July 6, 2011
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I hope you don't mind, but I checked out your blog through Ethan's. Landen is such a cutie, it sounds like he is a lucky boy to be surrounded by so many people that love and care about him. It looks like he is working so hard and making big strides each day. We won't be able to make it to the conference this year, I'm sad we won't get to meet everyone. It's nice to meet a group of people I feel I can relate to, even if it's under these conditions. If you want to check out my little man, our blog is http://the-tyler-family.blogspot.com. Take care!
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