and Cameron's public is asking for more! We have been to many doctors lately here is a full report:
Cardiology was last week - Cameron still has the hole in his heart known as ASD (Atrial Septal Defect) it is only 3mm, therefore it will not require surgery (YEAH!!) we will continue to monitor this and return in 6 months for another echocardiogram. There is even a chance the hole could reduce in size, which it would then be termed PFO. Either way we are delighted that we can check this issue off the list for at least 6 months. Cameron still has the minor aortic valve leak and this will require antibiotics anytime he has surgery to prevent issues.
It's only Wednesday and we've had a full week already - Tuesday we made a visit to Northwestern to see Dr Julien, one of the Ob's in the Maternal Fetal Medicine group who handled the case prior to delivery. She took mom through the comparison of Ultrasounds from 20-22 weeks and then 29 weeks when we learned of the Hydrocephalus, Dandy Walker and absent right kidney. The differences were remarkable. Hard to believe still that there was such a drastic change, we still have no answer as to why this happened and likely never will. I inquired how often something like our situation presents itself so late in pregnancy, they rarely see this and when I asked for a number they said less than one case such as this per year. I'll admit it was hard looking at the ultrasounds again and "reliving" the intial shock of the news from May 5th, but at the same time I recall how devasting this news was as they showed us how much of brain did not look "correct" and yet when I see Cameron here it makes me believe what a true miracle Cameron is, and hopefully will prove to be for years to come.
Today we met with the case mgr from Early Intervention to discuss how we begin the therapy programs offered by the state. It's all rather confusing relative to insurance and all, but we'll take it one step at a time and start with an evaluation in the next 2-3 weeks with a General Developmental therapist and a Physical Therapist. They will come to our home to do the evaluation and make a recommendation for treatment. We then headed off to the Pediatrician's office for his two week check-in. Cameron is now 8lbs 12oz - he has gained the exact amount of weight he should which is great and is now 21 3/4 " long - also on track. His head circumference is now 41cm, it appear to be growing along the same arc and not leaping off so we are still optimistic. We'll know more in two weeks when we see neurosurgery again. Cameron was quite the trooper today, as he received 4 vaccines. We also learned that he is at increased risk for RSV - basically a respitory virus so we need to petition the insurance company to get him some preventive treatment for this as it's very costly - something about thousands of dollars per dose. The good news is there is someone at the pediatrician office who will handle this for us.
As always we are trying to mix some fun into the daily routines of dr appointments and we've been busy :) Cameron went to his first surprise birthday party on Saturday for his friend Charlie's mom. On Saturday Cameron's cousins, aunt lisa and uncle bryce arrived on Friday, and grandpa dominick arrived. Great aunt bettie threw a wonderful bbq in honor of Cameron on Sunday where he got all the cutest clothes and gear. Monday was a pizza party at Cameron's house and then Tuesday night Cameron went to his first concert - the Beach Boys and Ravinia! He loved it and we're so happy that we could share Cameron with everyone at all of these special events.
Next week we've got another full round of Dr visits - pediatric surgery for the diapraghm and some prep tests for the appointment with kidney diseases the following week....till then thanks for reading and continued support!
xoxo mom and dad
