My experience of tragedy, trials, and triumphs!
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Tuesday, March 20, 2012

New Doctors, and Test Results:)




Overnight EEG




VCUG Test

Things have been moving along for us. I have a new pediatrician that I LOVE for Cam. It was awesome to be seen by a Doctor and have him take us seriously and do everything he can to help us. I was nervous at first because he was very overwhelmed with all the info on Cam. He didn't know what PVNH was (of course). But the next day he called me and spent 30 min. on the phone with me. He stayed up all night researching all the info that I gave him on Cam. They have a case specialist for the kids in his practice that have special needs. She called me shortly after the Doctor did and spent even longer on the phone with me going through all of Cam's needs. They got us in with a new Cardiologist that I really liked as well. In fact when he came in he was completely up to date on all of Cam's diagnosis' and problems. It was the first time I didn't have to explain it all to the Doctor. We also had an overnight EEG done and it was NORMAL!!! YAY! No seizures and he won't need to have one done again unless he starts showing signs of seizure activity. This was fantastic news.

What's next?
-Well, we have an appt. with the ENT in 2 weeks. We will be getting his adenoids removed to help with his sleep apnea.
-He will need a yearly echo to check his aortic root dilation. Apparently that is the one defect that can be life threatening. The cardio said even if it doesn't change for 30 years we should still always monitor it. The other 2 heart defects shouldn't cause any problems for him.
-We did the VCUG and it was normal...YAY! First test results that were normal so far:) We aren't out of the woods yet with the kidney though. We will do another kidney ultrasound in a couple months to see if the pelviectasis has gotten worse or not.
-As for his low immunity issues, we are seeing effects from that this week. Cam has the Chicken Pox, even though he has been immunized for them. He is very put out that we can't go and play with anyone and reminds me, "not my fault" when I tell him no. It's really cute.
-Cam's speech is coming along really well. He is still behind his age group, but is doing far better than expected. I am so proud of all his hard work.

Overall he is so sweet and fun to be around. He stays positive and happy even with all his problems. His spirit is strong and he gets through everything that has been thrown at him. He is an example to me and I love being his mom. If we get to choose our trials, I got it right when I chose him. He is one of my biggest blessings and I wouldn't change a thing about him. I absolutely adore him!

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