Evan had a great and busy week last week! Let’s see… where do I begin? Evan had another cookie test aka swallow study while he was an inpatient at Children’s which confirmed that we was still aspirating thin liquids but that he could safely take the thickened liquids at a honey thick consistency which boils down to 1 tablespoon of oatmeal cereal to 1 ounce of formula. We learned the hard way that rice cereal was very hard on Evan’s stomach post – op which is why we went straight to oatmeal this time instead of rice cereal. Now that we know for sure he can safely drink thickened liquids we have started the weaning process from the NG tube. I have to be honest in saying that removing the NG tube is a little scary for me. Evan does fantastic with bottles aka yum yums but the idea of all of his medicine being taken orally is a bit daunting. Right now, I know he is getting all of his medicine and I don’t have to wake him up to give him his last dose of medicine at midnight. I am also able to give the Gleevac very slowly through the tube. Without the tube he will need to take everything by mouth and since it has to be thickened that means that I have to thicken the meds as well and give them in a bottle which can become tricky. The good news is for the most part I have his feeds scheduled around the same time as his meds so that he is not getting a lot of medicine on an empty stomach. Like everything else I know it will work out with a little bit of faith so I am definitely not losing any sleep over it.
I have been moving very slowly on getting him to full feeds. The goal is for him to take 4 ounces of milk 6 times a day and in order for him to not eat overnight that means he must eat every 3 hours. The problem is he is not always hungry at the 3 hour mark so I will be talking to his nutritionist this week. Since he has the NG tube that isn’t an issue because I can make up a feed at night but once it is gone that is a hurdle we will have to cross. Evan gets so excited when he sees me with his bottle and sucks that thing down in no time! In fact I have to pace him otherwise he gulps it down in a matter of minutes and sometimes ends up throwing up. Right, now my goal is for him to take 2 ounces by mouth at each feed and what he doesn’t take I run through the pump. Near the end of the week I will work up to 3 ounces until we are at 4.
Evan also started occupational therapy again this week. Occupational therapy amongst other things will help Evan with his swallow so that we can eventually get him drinking thin liquids safely. This week the goal is to ensure that he equates oral stimulation with feeling full so before each NG feed I give him a mouth massage and while he is eating the goal would be for him to either take a pacifier to gum up a toy. He is not a fan of his pacifier as of late so I have mouth swabs that I will use to engage him. As most of you know children learn through imitation which is why I talk to Evan constantly! If I am in the kitchen I explain to him everything that I am doing. We already know he can say Mama and Dada and we are working on teaching him Baba (short for brother and easy to pronounce) so we were instructed to make silly faces and exaggerate our mouth movements to get his mouth moving. Now, Evan is a talker and loves to chit chat so I don’t think this will be an issue for him. We were also given a tumble form seat which ensures that Evan is in a upright position to aid in digestion when he is eating.
In addition to occupational therapy Evan also started physical therapy this week. Physical therapy is tough and he was pooped at the end of the hour and fell fast asleep. Evan used to have a preference for turning his head to the right which is slowly fading. The goal for physical therapy is to ensure things are symmetrical like holding his head in the midline and turning with ease to the left and the right, using both hands. Once is fully cleared from cardiology and his sternum healing we will be working towards him lifting up and sitting up on his own. Physical therapy and occupational therapy are both once a week and each session lasts and hour.
October is Down Syndrome Awareness month and in order to raise awareness I am committing myself to blogging every day during the month of October so I hope you will stick around and join me and help me raise awareness.