Tough Guy

Today was one of those long days at Children's 8:30am - 1:00pm. I know to some 5 hours might not seem so long, in 5 hours you can drive to Detroit (some of you are saying why would you drive to Detroit), watch two movies (we'd be lucky if we could watch one !) or be 3/4 of the way done with a typical work day.

In 5 hours Cameron had a kidney ultrasound, saw one of his NICU nurses(who said he still has the same face) endured a CMG (2 hours), saw the orthotist, set off a defibulator alarm while walking the halls of the 8th floor, and finally saw Dr. Yerkes his urologist and then hung up on the phone call she was trying to make from our room!

Good news... the kidney looks good, the CMG test which measures the pressures in his bladder, showed improvement from May '07 - great news. There is some question as to whether or not he is completely emptying his bladder when he voids but we are not going to worry about this right now.

We are all very pleased with this news, especially after the questions raised at the appointment 3 months ago.

I just have to say that Cameron is amazing how he deals with all of this stuff. The CMG is far from a pleasant test, and he was a model patient only crying when there was no other outlet for his pain. We hate to see him lying in the bed in pain with tubes going into places they don't belong. But by the time we sat down for lunch at 1:30pm Cameron took his first bite of Chocolate Chip Pancakes all was forgotten in his book!

How can Mom and Dad get in on that mindset??

Regarding his orthotics we are going to revisit this when we see Dr. Dias in November, for now they believe he's such a new walker we need to give him more time to possibly self correct some of the patterns he has. He will need to wear his AFOs about half the day - I'll be honest we let him take a bit of break over the summer...shh... don't tell anyone!

By the end of the day Dad looked at me and said I'm exhausted and I think that sums it up for all of us. But the good news helps to temper any exhaustion, and I know I say this often it's worth repeating: while I wouldn't wish our situation on anyone we are among some of the healthier children that have to routinely visit Children's and for that we have to be thankful and we will wish for more stories like ours to come out of Children's and pray for those who are struggling.

Walking Miracles

Today we went to the park to get everyone some fresh air since naps were not in the cards for anyone. I was on the verge of 'losing' it, after all it is Thursday, it's been a long week with the boys. But my frustration was soon replaced by joy. Cameron was walking everywhere once I let him out of our double wide stroller, it was amazing. I had to sit back for a minute and just watch him because I honestly have to say I was not sure this day would ever come. As I watched him walk across the entire park on the uneven ground filled with mulch just waiting for him to fall I was in awe. He didn't fall for a long, long time I truly couldn't believe it. I remember being at this same park in May and watching the other toddlers run around and wondering if that would ever be us, to see Cameron walk all on his own and not need any assistance was just a miracle. He wanted to keep walking anywhere and everywhere, so I let him, following behind with Connor in the stroller, he'd take a small tumble and get back up. I felt terrible when I had to cut this excursion off for the sake of Connor who was losing his patience with us and our walking.
I really never thought we'd be where we are and on those days when I'm not sure I can do this all again the next day I am going to remember Cameron walking all over the park and loving it! Having two kids within 22 months of each other is hard for anyone, add in Cameron's special needs and let's just say the guilt I feel at times could fill a very large garbage truck.
I feel bad that I can't spend more time focusing on what Cameron needs outside of therapy (aka therapy homework). But I remind myself with as many hours as this boy spends in therapy each week he needs a break to just be a boy and play or walk all over the park for an hour.
Other fun little tidbits about Cameron lately:
- Yesterday he discovered Mustard when I had it on my sandwich so today he had a mustard sandwich for lunch, he licks the mustard off the bread and then eats the bread. Sounds delicious right?
- He knows his colors pretty well, today he was going through our dresser and I asked him to hand me my orange pants. Dad was watching and was doubtful, Cameron dug all the way to the back of the dresser and grabbed them and brought them over to me. During therapy he often will match the colors on various toys without prompting. I don't know when a typically developing child gets their colors down but I am proud that Cameron know his pretty well!
- He loves to say "bye bye" and it's so cute how he says it, he also calls for "DAD" every morning from his crib when he wakes up.
- Every morning we wake up to Cameron and Connor babbling and it's the best wake up call there is! That moment in the morning when your kids wake up and you can hear them in the monitor babbling is one of the best moments in life to me. I want so badly to know what they are talking about. You can just hear the joy in their tones.
- When he sees Dad's car pull in the driveway he screams out "DAD". He is starting to say "Help" &"Out", I love hearing his voice and can't wait to hear more of it!
- He loves raspberries, we discovered we had a raspberry bush in the backyard over the summer and he would go pick them, now I am resorting to buying them in the stores something I always considered a special treat before kids b/c they are so expensive !

Connor is doing great, he is sleeping through the night - what a dream!!! Cameron took over a year. He is such a great baby, I am a little concerned about his development, one of the hazards of all Cameron's therapy history. I've had our PTs take a look at Connor and they think he's doing ok for his corrected age - I am just anxious and would like him to close the gap. We will discuss at our next pediatrician appointment.
Next Tuesday we have our appointments for the CMG, kidney ultrasound and urology - hopefully there will be no issues. I am a bit anxious given our last visit and not looking forward to putting Cameron through the torture that is the CMG - poor guy.

We'll update with any news on the kidney front next week. thanks for reading!



CAMERON AND HIS COUSIN MAUREEN WHO CAME FOR A VISIT!