What a bizarre winter...as I right this it is 50some degrees at the end of January! No complaints here!
Not a whole lot new to update about..thankfully! No news is usually good news when it comes to Noah! Overall he has been doing great and been pretty healthy since Christmas. **knocking on wood**
In terms of eating/feeding...He is eating great! Small, but frequent meals as usual. He still struggles with weight gain. Despite the 1800-1900 calories he gets between oral meals and tube feeds, we just can't seem to get any muscle or fat to stick. Since his last hospitalization when he was so sick and he was working so hard from a pulmonary aspect that he couldn't metabolize his breathing treatments, the Dr's have been again saying that his metabolic needs due to his lungs are tremendously high. I spoke with the dietitian yesterday and we are once again looking for ways to add more calories to his day. We will be adding another meal for a total of 6 oral meals a day, two compressed tube feeds through the pump in his backpack during the day, and his usual continuous feeds through the pump at bedtime. He is sensitive to protein and milk casein so there we are somewhat limited to what boosters we can use. We will be trialing some MCT oil this week. We are doing blenderized formula during the day and Compleat at night.
In terms of school and development.....He is currently into his 2nd year of the special needs preschool through the school system. This will be the last year before Kindergarten. After some lengthy talks with his teacher and reviewing his testing it is obvious that he is not ready academically for kindergarten. He is making progress, and the teacher says she is not nearly as concerned with the amount of information he knows, but more importantly, the length of time it takes him to learn. For example, we have been working on counting for the past two years and he can not count past 5. This being said, we thought that we would hold him back and put him into a community pre-k program for next year, but due to his anxiety issues, the teacher and I both agreed it may be in his best interest to continue on to kindergarten at his present school. He is familiar with all the staff, many of the older kids, the teachers, the environment, etc. Putting him into a new environment next year would be like throwing him to the wolves. We assume that by doing this, he will most likely repeat, but at least he will be able to thrive in familiar surroundings. The goal is half day kindergarten and half day home program.
Neurological.....we have been seeing a child psychologist with Noah for his anxiety issues as well as potty training. He has strongly recommended a neuro consult with a possible MRI of his brain. He says there are some clear issues, but whether they all stem from his medical background or a possible issue from being on EMCO, they aren't quite clear. That's not a quick process. We have been on the waiting list for a neuro consult for months. I am hoping by spring, he will be able to be seen.
Transfer of specialty care....we have slowly been putting together a good team of Docs here in Ft Wayne. While we love, love, love U of M. It's soooo very nice to have a go-to person that is local. We will be transferring his GI care over to a great new GI specialist here in Ft Wayne. We will see him the end of Feb and I am looking forward to a new perspective.
Pulmonary.....Since his last hospitalization they have changed some of his medications around and we will be following up with his pulmonologist in a few weeks to get his thoughts thus far. He has also talked about doing some lung function testing and an ECHO. Not sure if this is still in the plans or not.
Sorry that turned into a novel!
Elliot and Zane are doing great! Zane is just getting into the wrestling season and loves it. I, however, am not enjoying being his guinea pig for new moves. They boys have taken over with that and obviously love the attention! Elliot is about to celebrate his 3rd birthday!!! I wanted him to have all the say in the party planning but the only thing he will commit to is that he wants "cheesy goldfish" to eat, and "the piggy from the zipline commercial" to be in attendance. I may have to intervene slightly...:)
Thank you so much for checking in on us and I hope this finds everyone doing well!!