My experience of tragedy, trials, and triumphs!
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Friday, March 7, 2014

Good News for Cam!

All kids should go to the doctor for a "well-child" visit once a year.  When you have medical concerns or health problems there are a lot more Doctors to see than just your once a year well-child visit.  Cam's syndrome 22q11.2 deletion and PVNH causes global health and developmental problems because of the fact that he is literaly missing part of his genetic code.  I would like to say, that even though we go to more Doctor appt.s than the typical kids do...we have it pretty good in the 22q/PVNH world and I am grateful for that.  My heart goes out to all my online support group friends that have it much worse than we do most days.  All the kids are different...but they share one common thread.  They all have to endure way more than most!

Our annual "well-child visits" include: Neurology, Nephrology, Kidney Ultrasound, Cardiologist, Echo, Endocronologist, several blood work draws,  immunology (every 3 years), not to mention his ongoing Speech Therapy that remains weekly/biweekly appointments, and his actual "well-child" from his pediatrician.  We are at the beginning of all our yearly appt.s but got some slightly good news today from the Nephrologist (kidney specialist) that I didn't want to wait to share!

Drum Roll please....Cam's kidney grew a little bit!  It still isn't near the size they want it to be, and still shows no signs of Hypertrophy (compensating growth) for only being born with one kidney.  It is good news because last year he was worried that it was done growing.  We can hope and pray for continued growth.  His kidney function score didn't get any lower also!  It scores 85-90 which is just below the low normal standards (normal being 120).  It's not great...but it didn't get any worse, so we are thrilled!

What really kills me with this little trooper is his awesome attitude.  When the nurse asked him to pee in a cup today, he giggled and said, "sure" in an adorable little 5 yr old voice not pronouncing the "r".  He lays perfectly still as they are doing the Ultra Sound on his tummy and back until they have all the images they want.  He had to have his blood drawn twice in the last month and he didn't cry either time.  I don't know if it's worse than when I used to have to hold him down while he cried as they drew his blood.  I am glad that he has developed a tolerance and it doesn't upset him anymore.  But, it stings a little that he has had to endure it so often that it doesn't even phase him anymore.  No five year old should be ok with needles entering the veins! (Again, it really could be so much worse for him!)  We will enjoy this time when it's just follow up appt.s to make sure everything is ok, and continue to pray the appt.s always remain that way!

Hugs and kisses from this kid...truly fill my soul!  I love him to pieces and I'm so grateful to have him as mine.  I'm one of the lucky ones:)