Weight: 13 lbs 11 oz (13%-YAY!)
Length: 25.5 " (64%)
Head: 16.25" (38%)
Mason has grown up a lot the past few months. He has gotten so much bigger! He smiles a lot more now and loves laying in his gym and batting at toys. He hates being on his tummy but he can roll from his back onto his left side. He sleeps great thanks to his pump that just feeds him throughout the night. He sleeps from 7-7 which is heaven! Mason makes the cutest little baby noises. He coos and says ma ma ma when he's sad. He also purrs like a cat when he sleeps. He is so snuggly and loves his momma so much. I snuggle and kiss him whenever I can. He has been awesome at gaining weight on the tube, but I still have a love/hate relationship with the tube. I love that he is gaining weight and that I don't have to worry about weight as much. However, the tube makes Mason throw up a lot, and gag, and cough, and always sound congested. Whenever Mason throws up his tube usually comes up too. I've thankfully gotten pretty good at putting it in and I've even done it a few times without Casey.
As for Mason's prognosis, we are still in the waiting game. I take Mason to physical therapy, occupational therapy and feeding therapy every week. Our physical therapist works on helping Mason to build up muscle tone (in hopes that it will help his swallow/suck). In occupational therapy and feeding therapy we have an OT (Teri) and dietitian (Chris) who work on getting Mason to drink more efficiently out of a bottle. Mason can only drink a few ounces of thickened formula every day so we don't risk him aspirating. The problem with him only getting a few ounces orally each day is that it's becoming tougher to get him to drink out of a bottle. He's even worse at drinking out of a bottle than he was before... which could be due to having a tube down his throat, only being able to drink a few ounces a day, or the thickness of the formula. We don't really know. Chris sets Mason's feeding schedules, the amounts he gets and monitors his calorie intake and weight gain. It's hard for me to feed Mason on a schedule. I've always just breastfed or bottle fed my kids on demand and they would stop eating when they were full. This tube feeding is totally different. Everything is set by the dietitian which I'm glad for because I would have no idea how much to give him. Mason has had the NG tube for a month. Ironically my biggest worry lately has been the thought of him NOT on the tube because he won't be able to keep up the amount of calories he needs without the tube at this point.
Besides weekly therapy, I take Mason to see a neurologist every few weeks. Mason's neurologist will be the most important specialist we will see for the next few months. At this point we don't know if Mason is just behind developmentally or if he has a genetic condition. Mason's biggest challenge is eating but he also has other symptoms that have his therapists and neurologist worried. He doesn't have good eye coordination and he doesn't have good muscle tone (hypotonia). While these symptoms aren't as worrisome on their own they are a worry for Mason because he has these issues on top of his weak suck/swallow and oropharyngeal aspiration. All the tests neurologists normally perform like head ultrasounds, MRIs etc. have come back normal for Mason which is good and bad. I took Mason to another pediatric ophthalmologist last week (he saw one while he was in the hospital) to rule out any issues with the anatomy of the eye or poor eyesight and again everything was completely normal. Because all of these tests are coming back normal we're starting genetic testing. Genetic testing is a long process and we don't even get to see a geneticist until January, but last week Mason got his blood drawn to test for a specific syndrome (Prader-Willi) that his symptoms most closely resemble at this point (even though he doesn't have ALL the symptoms). We find out in the next few weeks what the results are.
At this point I have been trying to be optimistic but realistic. Mason is who he is and who God wants him to be. I have no control over this. I've done everything I can and the rest is in God's hands. We love Mason so incredibly much and just want him to have the best care and best chance at happiness no matter what condition he has. Optimistically Mason could just be behind developmentally and be able to catch up in the future. Realistically it will be a long, emotional process but I know that this sweet spirit is here for a reason and I feel so blessed to be his mom and carry him through whatever challenges he faces. We love you so much little Mason muffin.
