Hello again everyone! Today is Charlee’s birthday and I wanted to give a brief update and one last post on how she is doing before I completely put this blog to bed. Words cannot describe how thankful and blessed we are to even be celebrating a birthday for Charlee today. This time last year we didn’t think we’d make it to see the new year and now 365 days later she is the happiest, funniest, resilient and strong baby I know. Over the past few months she has continue to battle her reflux problems and with the help of her doctors we think the most recent change in her formula and diet we have found what works best to limit the reflux. She still has her G-tube where she is fed, but she is slowly getting better at taking some baby food by mouth. Her weight gain has been steady since being home but we have seen an even better result going to this new feeding plan. She is all the way up to 15.2 pounds. Which is 14 pounds bigger then when she was born! She is completely off oxygen during the day however is still needing some oxygen support at night. Her most recent sleep study showed she had major improvements in brain activity and sleep apnea during the night compared to her last sleep study in June. Her strider (squeaky breathing) has still been an ongoing issue she is battling and has been seeing her ENT doctor once a month. With it not really improving since she has been home that is the next hurdle she has to clear. Each visit to the ENT they bronch her and can’t ever really get a clear image of her throat other then seeing significant swelling. We have tried a few different medications to help the swelling but haven’t had any luck. They want to see if the new feeding plan can help limit the reflux and hopefully then help her airway swelling. But with that being said she doesn’t know any better and it does not bother her one bit. Her favorite thing to do right now is simulated standing. She can’t quite stand on her own but if you hold her hands she can stand for quite a while and she loves it. She doesn’t love the idea of crawling yet, partly because her Gtube we assume. But it seems like she will be walking in no time!

Alix and I want to thank all the friends, family and support we have received over the last year. 2020 has been miserably tough for everyone so we appreciate you all keeping us in mind and supporting us through the past year. We can’t thank you enough and hope everyone has a great holiday season!