Hello!
Loki is doing very well. Yesterday, Mrs. Karen took them (his daycare) to the local firestation. He got to meet a firefighter, and see a fire engine, and learn stop-drop-and-roll. On the way to his doctors appointments, he fell asleep in his little red fire hat. It was so very adorable.
We never got to see ET (regarding his stoma bags) they were runnign very late, I was tired and cranky, and so we left after sitting there for 1 1/2 hours. So the bags still are coming off 1-2 times a day, and driving the three of us nuts (me, Peter, and Mrs. Karen).
We went to see Dr. Plautz over in Pediatric Oncology. Loki is doing very well. He is now 26.5 lbs, and growing!!!! They gave him his flu shot, and they drew his blood. I expect his counts to be normal. His next appointment is Nov. 22nd, for a routine follow-up.
Dr. Plautz looked up the orthopedic notes from earlier this month, and confirmed that Loki's hips are looking normal. So no visible or noticable abnormalities with his hips, ball joints, or growth plates. Loki will see the pediatric orthopedics doc in April 2005 for follow-up.
His next set of CT scans are Dec. 14th. That same day he sees Dr. Macklis his radiation oncology doc for his 1 year follow-up. I expect this to be a routine in and out appointment.
I plan to get the go ahead to resume Loki's vaccination schedule in early 2005.
Otherwise, Loki is a normal and happy 27 month old little boy. We have been having issues with him pulling off his ostomy bag when he is angry or upset...'cause he wants a bubble bath. But if that is the only challenge we have to deal with. Darn it, we count ourselves very blessed and very lucky.
So, after a "prolonged" doctors visit, and more X-rays of Loki's hips, the pediatric orthopedic doctor said that Loki's hips, ball joint, and growth plates all look normal.
Considering that it has been almost 1 year since his radiation, and Loki has grown ALOT, estimates are that he is less than 15% likely to develop any side effects in his bones from the radiation. This is excellent news.
So, the doctor wants to see him in 6mths, if the Xrays then are also good, then the risk of developing side effects drops to about 5% or so. Beyond that, the doctor said he would see Loki one more time 6mths later (so 1 year from now), and if those Xrays are also good, then there would be no reason for Loki to continue to see him.
Alicia
Good Evening!
Just a quick post...tomorrow Loki will be seeing pediatric orthopedics for an initial assessment of his hips and legs. To talk to them about keeping watch as Loki grows for side effects of the radiation.
I spoke with the urologist on the 4th. He did not recommend surgery for Loki until at least 4 years of age, as the organs (intestine/stomach) that would be used to correct his urostomy are just too small right now, and would not serve him adequately in adulthood.
In addition, I spoke with him briefly about the use of synthetic bladders and sphincter muscles. The current technology is designed for individuals who are older, much older, and not designed to be used in individuals Loki's age. So, we wait, and see what technology becomes available over the next few years.
I will be speaking with several of my contacts in the FES (Functional Electrical Stimulation) and Neural Engineering fields regarding the status of bladder control and reconstruction. The FES indivduals who work with paralyzed patients also work closely with urologists to restore bladder control and function. I am hoping these individuals may have a heads-up on developing technology.
The good news is that Loki is no longer on the amoxicillan. The cloudy urine, noted on Sept 22nd, did turn out to be a UTI. Both bugs immune to amoxicillan. He is no longer on any drugs to prevent UTI's, as he is no longer on chemotherapy.
Loki will continue to take bactrium, but should be off it by the end of the year.
Good Evening!
Just an update.
So, as mentioned before Loki's scans are CLEAN! He did indeed have a UTI, and that has been treated. In response to the UTI, and the fact that the bacteria were Amoxicillan insensitive, I requested an appointment with his urologist to discuss having Loki come OFF the antibiotics. He agreed, so Loki is now ONLY on bactrium for three more months, as a precaution, but could be taken off the bactrum sooner. He only needs the anitobitics for a UTI, if fever is involved, as Loki will always have bacteria in his urine. At this time last year, Loki was on 7 medications, now he is on just the one.
His urologist recommened waiting until at least 4 years old to internalize Loki's stoma, as the conduits and organs needed to make the pouch are too small right now, and would not serve him well as he ages. I can understand this, and Peter and I will explore our options.
A year ago this week, we were all undergoing a stressful and troubling time. Loki's anniversary of his surgery is the 6th, and the anniversary of my surgery is the 14th. And, to think about how far we have come in one year is utterly amazing.
In addition, I found out today, that Anna is doing well. She is having fevers again, but is doing well. I didn't get to see her, Peter was with Loki, but I am so relieved to hear this news.
