Sorry for the late monthly update, it’s been a bit busy lately. The girls are back in school and that leaves lots of time for Liam and mommy to hang out during the day. Liam is starting to ‘scoot’ around. He can’t crawl, so he sort of moves his but side to side and eventually starts to make forward progress. He can stand for short periods with support, but still gets tired easily. He recently got a gait trainer which he likes, but only in short quantities. It helps him start to put pressure on his legs and learn how to straighten out his feet. We call it his Harley. Mom and dad recently went to the Myotonic Dystrophy Foundation’s annual conference in Washington, D.C. We learned a lot, we met with old friends, and made many more. It’s amazing to know there are other families that are going through the very things we are struggling with. It was great to know that there is hope and things will change. We only made two trips to Mott this month, both routine scheduled visits. The first one was to meet with the Vent Clinic. We have been weaning Liam off the vent at night, and he is almost off the vent 24 hours a day. We go back towards the end of November to get a Passy-Muir valve. Essentially, it’s a one-way speaking valve for his Trach. The appointment can’t get hear quick enough. Next up will be to cap his trach and work towards de-canulation. A bit of a ways off yet. His second visit was to see the Audio folks and the Otolaryngologist (ENT). The first part of the visit was to determine if Liam’s hearing is developing normally and he passed with flying colors. The next part was needed to approve going to the speaking valve. The ENT will keep Liam at the same sized trach since there is hope we’ll be able to remove it in the near future. We also had a quick scope of his lungs. Daddy just loves this part. Liam’s lungs are healthy and looked great. I will spare the details for this portion of the update but we recently lost Medicaid for Liam because we didn’t submit a form back in July. Daddy disputes we received it. However, we have started the appeals process and have requested a hearing to dispute this. Please keep us in mind and say an extra prayer. We should be able to get him back on it, but it’s stressful and frustrating in the meantime. Unfortunately, it’s not something easily reversed and due process takes a long time. Financially, this is a huge deal for us. Team little bit would like to send a special shout out to some caring folks at Lionel Racing in North Carolina. These folks were able to shed some much needed light on our path of darkness and we really can’t say thank you enough. What a wonderful gesture it was, THANK YOU! We will end this with a few photos from the last month. Enjoy them because we sure enjoy taking them. Thanks for all the help and support. Team little bit.
Posted on: Tue, 30 Sep 2014 21:00:01 +0000
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