Lots of things have been happening in the Miller house!
We would like everyone to meet the newest little member of our family!
Comet came to us from Bosque Animal Rescue Kennels in Clifton. He will be 1 years old in May. He came to the kennels along with his mother when he was just a puppy, still nursing, he was the last of the litter. He is a fairly calm dog, and has no problem with John, Joseph, or Alexander petting or gently nudging him away. Comet has seemed to adopt me, Jacqueline, from all the family members the most. He will follow me and lay right next to me no matter where I am. We have been crate training him for when we are gone for appointments, and He has actually taken fairly well to it. Also working on him being house broken.
Baseball Season has begun!!!! Joseph is on the t-ball team The Longhorns. Alexander is on the baseball team The Braves. Joseph is loving being able to play. He gets so excited when it is a game or practice day. Alexander is not as excited but is chugging along and trying. So life has been taken over with baseball/t-ball practice & games.
Thomas had to have an endoscopy recently. He is now being put on an over the counter acid reducer due to having a lot of acid in his esophagus and stomach.
John has had a slew of appointments the past few weeks.
We saw Dr. Ramprashad, GI, and he wanted us to take the bolus feeds we had been doing for John from 3-4 to 2-3 a day. Also he was not as concerned about the weight/height ratio that John’s primary doctor, Dr. Meza, was concerned about. Also gave us the go ahead to try regular pediasure vs pediasure peptide. So we have been slowly adding pediasure to John’s pediasure peptide to 50/50 mixture. Follow up in 3 months.
We had our 6 month review with ECI with John’s therapists. We will be increasing John’s physical and occupational therapy from 3 to 4 sessions each a month. Also John’s SST, Specialized Skills Training, has gone from 3 to 2 a month. So instead of the 17 therapy appointments a month (including his 8 speech therapy appointments) we will now have 18 therapy appointments now.
We saw Dr. Powitzky, ENT, and had a hearing test with Dr. McCormick. John’s hearing test came back fine. Dr. Powitzky was pleased with his tubes placement as well.
Trach/Vent Clinic Day
First visit was from Dr. Powitzky, ENT. Since John has been running a fever the past few days and also a runny nose, Dr. Powitzky has ordered some amoxicillin to help with his runny nose since last week. Follow up in 3 months.
Second visit was from Dr. Sagar, pulmonary. She has changed his heart rate setting from 80 to 50 per minute. Since John has gotten older he will have a lower heart rate obviously. Also she informed us that the sleep lab is now looking at July/August. Honestly at this point I am no longer surprised when she tells me it is longer each time. I guess it has to do with that this sleep lab was supposedly going to be open almost a year ago now and nothing is to be shown for it. Also now we will be seeing Dr. Ogborn as John’s pulmonologist. I prefer him because he is a very straight forward doctor and understands I will do what I have to do to get my son taken care of.
Third visit was from the Trach specialist. She gave us a new PMV, speaking valve due to us losing the last one we had. Also she will be placing an order with our DME, medical supply company, to provide us with a new PMV every 6 months.
Fourth and final visit with Trach/Vent Clinic was from the dietitian. We will be cutting back the bolus feeds from the 90 mls to 45 mls 2-3 times a day. We are working on making him want to eat more by mouth at this point. Also we want to see if this will make John want to eat more by mouth to eventually cut out his g-button feeds.
Also I will be having carpal tunnel surgery on April 15th. So after that day I will not be able to use my right hand for 3 weeks. I will not be able to update the blog as much. I will see if I can get Thomas to update it at least once so everyone knows what is going on.