Is it only Thursday? This has been one week packed full of obligations and appointments. Sunday I worked my normal 12 hour shift and came home to a fabulous dinner prepared by my hubby. Monday morning I had coffee with my mom and caught up on the past week's events. After inhaling too much caffeine and sugar I headed back home to grab Carson off the bus and get Al and Eli in the car for appointment #1 of the day.
Carson had his routine check-up in the Behavior Clinic at Childrens at 1230. The appointment went quite well and his NP was pleased with his progress over the past three months. Al and I are quite happy with Carson's new skills in self control, calming techniques, and redirecting himself when he gets overstimulated. Carson was able to show off his intelligence a bit by reading and spelling all kinds of things and throwing a bit of math in the mix as well. He is such a fun kid. Growth over the past three months has been good and his new stats are 48.8" tall and 48lbs even. Not too shabby at all. No wonder everyone thinks he is 8 though!
Next Elias had his GI appointment at 315. We went over all of the symptoms he has been having over the past few months as well as his recent test results. His weight gain is poor but he is tall. New stats are 41.75" and 34lbs. He needs more weight on him. They ordered him a new feeding pump that he will be able to wear more comfortably during the day (the Zevex Entralite Infinity)- we have an old Zevex Entralite now that is bulkier and heavier. He is also going for an upper GI on Friday to make sure his Nissen fundoplication is truly undone. Our GI doesn't want to send him back to our surgeon for a re-do without a recent upper GI study showing it is undone. He is also getting an abdominal ultrasound on Friday to check for gallstones due to his recent severe right sided pain and clay colored stools. Hopefully that comes back negative. We will see where to go once the test results are in on Monday.
Tuesday was Eli's appointment with Phys Med where he officially received his cerebral palsy diagnosis. Spastic Diplegia. Right into his chart. It seems so permanent even though we have been living with it and talking about it for years. To have it be in black and white finally seems awkward. His doctor said that since his studies have shown no other reasoning for his chronic aspiration, it is linked to his CP and will most likely be permanent as well. That was a blow but we will deal with it. He is loving his AFOs and doing quite well with them. They are working his muscles and will say, "my legs are tired, can you carry me?". We won't do it but at least he is showing us that the braces are forcing him to use the correct muscles to walk and breaking that tone down.
Tuesday I was also supposed to meet some wonderful friends for lunch but woke up with a fever and feeling like someone hit me in the face with a baseball bat. Wednesday wasn't much better and Eli started feeling sick. Today is worse but I don't have a fever finally. End of winter colds are no fun at all. I thought I had escaped it but unfortunately the bug attacked me hard. We have gone through way too many tissues in our household this week!
So....there's the update for the week. Tomorrow we have testing but it's Friday(even if it is the 13th) so it has to be a good day. Thanks for reading if you got this far and sorry for the venting. :)
1 comment:
awww.. I read that far and don't mind you venting! Hope you feel better. I will be at Childrens on Monday for an eye appt. with Ava ... checking her cataract, her prescription, etc. She's starting to not want to wear her patch and has been saying "I can't see" but luckily it's when it's poorly lit.. the life of preemies! Thinking of you all!
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