Update

This week was busy with many appointments for Mason.

On Tuesday, he had an upper GI, neck x-rays and a follow-up with his Pediatric Surgeon. He absolutely hated the neck x-rays, I can't even explain in words how uncomfortable it looked. We had a little episode of bleeding around his g-tube after the x-rays. He was restrained and trying to squirm so much that the tissue around the tube got extremely irritated and started to bleed. When that stopped, he had his upper GI. He didn't enjoy that either. Food taken by mouth will go into his stomach only if he is held upright. Mason's esophagus does not work very well at pushing the food down by itself. The docs may need to scope his esophagus in a few months to make sure everything is structurally ok. Until then, he is allowed to eat by mouth if we hold him upright for 30 minutes afterwards.

We tried to feed him a little bit of banana baby food and he actually liked it. We just gave him little bits on our finger and he licked it off. He actually ate 1/2 a teaspoon of it last night. This is a HUGE step for Mason! We will continue feeding him little amounts and we plan on giving applesauce a try next week.

Mason also had his Early On evaluation on Thursday. Since Mason has a qualifying health issue, he is eligible for special education until age 3 through our school district. The evaluation went pretty well. Mason is on target and actually advanced with his social skills. His gross and fine motor skills are behind. Even though he can sit without support and can stand and balance grabbing onto our hands, he has skipped the normal baby floor milestones. Mason will rock from side to side, but with not roll over from his back to tummy or tummy to back. He has just started to try and roll over from his back to his tummy. He is close, but not quite there yet. We have lots of homework with his neck muscles and tummy time (wish us luck). The therapists are discouraging his standing and sitting until he can become more proficient on the floor. We return for another session on January 10th.

We also had to "reverse" his crib so that he is looking to the right to see us enter the room and also to see his crib toys. It doesn't seem to work as well with his g-tube and nighttime chimney feeds. We may have to create a compromise somehow. We will see how tonight goes.

We hope that everyone has a Merry Christmas and a Happy New Year!

Four Generations

This weekend was very busy for all of us! Thursday night, Mason had a visit from his Great Grandma! We had 4 generations in the house that night. It was a great visit, except for Mason is starting to get nervous around anyone but his parents. Friday night, Mason had some trouble falling asleep and staying that way. He would fall asleep only to wake up moments later and we would work on getting him to sleep all over again. We also spent Friday night preparing for two house showings on Saturday. No bites yet....we were pretty surprised to even have some showings this close to Christmas.

Today was spent clearing the snow! Travis went outside with the snow blower only to return inside 1/2 hour later with a broken belt :( The closest part was in Flint, not a drive that we could have made today. He spend the rest of the day shoveling, and shoveling and shoveling.... I was surprised that none of our neighbors (all of whom have running snow blowers) did not offer to help. Tis the season....hopefully when we move, our new neighborhood will be more neighbor friendy!

This week will be very busy as well. Tuesday Mason has his upper GI and follow-up with his Pediatric Surgeon. Thursday, he goes for his EarlyOn evaluation and then his next RSV shot.

Update

Sorry it has been so long since our last update. Things have been really busy here with Mason and the upcoming holidays. We have had a lot of showings on our house lately and the cleaning and preparing consumed much of our time last week.

Mason is tolerating his g-tube feeds very well. We have gone up on his feeds slightly to allow him a couple of hours "off" during the day. This is a huge help for me and allows me to carry him around the house without a pump or an iv pole. He is enjoying his freedom! After Mason had his g-tube put in, he started to refuse any bottle we tried to give him. He really protested and was having a meltdown every time we tried. The surgeons think that maybe he is having a hard time swallowing past his wrap and he will go in for an upper GI on the 18th to see. We are hoping that Mason will get his g-button in January. The button will take the place of his long g-tube and will be almost flush with his skin.

Mason will be starting physical therapy at UofM in the next couple of weeks. We will be going once or twice a week. At our last surgery appointment, our favorite therapist Dan came to visit (he took care of Mason while in the NICU). He did a quick evaluation and thought that some outpatient therapy would really help Mason. He is not too far behind, however he has mild torticollis of his neck. The basically means that the muscles on one side of his neck are tighter (on the ECMO side) and he does not have full range of motion. He spends lots of time looking to the left while slightly tilting his head to the right. Therapy will help him stretch out those muscles before it becomes a big problem.

6 Months Old!

Mason is still doing really well with his G-tube. So far he is tolerating his feeds and has moved to continuous feeds that are plugged directly into his tube. We will continue these feeds for another week and a half and then move on to bolus feeds. We keep him on chimney feeds at night so that he can "burp" through his tube and stay comfortable.

Mason is still talking up a storm. He especially likes to be a commentator on football games. There is something about football on tv that really catches his attention. He is now able to have tummy time again but has decided he likes it even less than before. He would rather stand up. He has hit another couple of milestones this past week. He can pass a toy from one hand to another and when he is in my lap he can pull himself up from sitting to standing by holding onto my hands. I think Mason wants to skip all of the rolling over stuff and go right to standing upright!! Now that his incision has healed and he seems comfortable we are working on sitting without support again.

Last week we visited the Pediatrician for some more immunization shots and also saw the Pulmonologist. Mason's feeds were increased because he was not gaining weight as fast as they had wanted. Most of it had to do with losing weight after his surgery and then taking a couple of weeks to gain it back. If he hasn't gained enough in 3 weeks, we will have to change his formula from 24 to 26 calories. At our next visit, Mason will probably be removed from oxygen all together. They were actually planning on taking him off last week but saw that his throat looked red and were worried that he might be coming down with a cold. If so, it will be nice to have some supplemental oxygen at home in case he needs it. They also thought that the extra oxygen at night will help him retain some calories and hopefully gain weight a little faster. At our next appointment they will also reduce the amount of breathing treatments he is getting every day. We are also hoping that next time he will be completely "grown out" of his diuretics. He was almost there last week.

Tomorrow we will visit one of his Pediatric Surgeons to check on his g-tube and incision and hopefully get the ok to start letting him taste some cereal and baby foods.