Well I completed one more long visit back East. I took my mom,dad,and Kaylee with me. I needed extra help since I had just had major surgery 10 days earlier (thanks heavens for frequent flyer miles)Easton did great he complied with all of the tests and never really protested anything they did. He's such a trooper. We found out that there's been some hearing loss but we don't know if its progression or fluid build up behind the ear drum so another appointment with our local ENT. His opening pressure had come down from 23 when we started the trial to 10 which is great 23 is on the higher side of normal and 10 is completely normal another sign that this drug is helping with thing unseen. He also did some developmental testing that showed improvement in all areas some more than others like in certain areas he tested at 72 months he's only 68 months (its so weird to refer to your 5 yr old as months)but in other areas he tested at like 58 and then age appropriate in other areas so if you averaged everything out he is on track if not above his age (only by a couple of months). His neuro/cogn exam hasn't happened yet the Dr. that happens to preform this test was on vacation while we were there so I am going back for a 1 hour test crazy but this test gives me a lot of info about where he is developmentally even more so than the other test. So I will do what I have to to get the test done. On a brighter note WE ARE FINALLY GOING TO DO THESE INFUSION AT PRIMARYS yeah it only took about 9 months worth of paper work to get things finalized but its done so starting Sept 8Th he will get treatments in Utah I will still have to go back every 6 months for testing. Another exciting event that happened this visit we were able to do the infusion with no type of anesthesia no versed or pesidex (sp) we were able to talk him through getting accessed and after that he just layed there and watched his ipad. Since we had such along visit we were able to go to the beach and play for a while. The weather was perfect. We also went to the cheesecake factory and celebrated Nathans birthday. He would have been 15 Its hard to believe. I often wonder what he would have been like as a teenager what would he be into would he be a sports fan, definitely a hunter, or would he be into computers I guess one day I'll find out. And Easton starts his first day of regular ed. kindergarten on Monday wow all my kids in school and easton is going to full day kindergarten what will I do with myself I know I'll become a bus driver you heard right I started driving bus for the school district and I love it so far its only been a week but it works into our schedule really well.
Camille danced her first performance for drill last Friday at the high school football game the drill team did an awesome job. Kaylee started Jr. High and so far so good she hasn't gotten lost or been unable to open her locker and seems to be liking it so far. Weston started 4Th grade I can't believe how quick every ones growing up on me ahhhhh. And did I mention that my whole family is so excited that I don't have to travel so much!!!!!!!!!!
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