Maybe she knows the answers to all of our questions? Wouldn't that be nice! I am sure you are wondering what on earth I am talking about...
Cameron LOVES Max & Ruby, he is now acting out some of his favorite parts of the show. Calling Ruby's friend "Louise" is one of his regular past times. It's hilarious, because when you think about it "Louise" is a kind of funny name to hear a 3 year old say. Although Grandma Randi would certainly appreciate it, as it is her middle name :) The other day Cameron acted out this entire episode where Max & Ruby keep missing the bus, he was running to and from the window, checking his "schedule" for the next bus. We love to see this part of Cameron developing, because he really doesn't do a lot of "pretend" play which we've talked about in his therapies. Not to mention it's just funny to see him develop this little personality.
He has also had a word "explosion" it is amazing to hear his vocabulary and not have to rely on pictures to communicate. I recall hearing from someone that a lot changes as they get closer to 3 and he could make some really big leaps, I was like yeah, yeah....and wow, he really is talking...in more than two word combinations - we are hearing some actual phrases and sentences, it's so great. We are less than a month away from his IEP (Individualized Education Plan) with the School and the end of Early Intervention. We are focusing all of our efforts on this transition vs. dealing with more Dr. appointments. It's a relief to know that we aren't due back at Children's until the end of May.
Although we are nervous and stressed about this transition process I think Cameron is going to love school. He asks me at least once a day "Cameron go to school" , he watches all the neighborhood kids walk to school and then we go over to the school/park and he tries to open all the doors to get into the school. I keep telling him just a few more months.
We have come "down" from the tense Dr. drill of the last month and are busy monitoring Cameron's input/output, who knew I'd be doing excel spreadsheets with the title "Cameron Output 2009", this is what I went to college for, really.
I called the Dr. last week to give them the update on his progress, well they have not called me back, let's just say I am not rushing to call them again as I anticipate we'll be going the suppository route, which by the way, apparently many of our readers have experienced the joy of giving them to their children.
Also thanks for all the "shriner" contacts, big help, we really appreciate everyone that reached out to us.
Connor is doing great, he is walking all over the place and is generally such a great baby, well I guess he's not really a baby anymore :( Our PT today asked, "How premature was he again?" Two months - it's amazing we both agreed and how he is just sailing along, let's hope it remains that way for years and years to come. He does this great "dance" whenever he hears music. Basically bobs his head back and forth, it's so funny, we literally can't help from laughing out loud. He also has a future in eating contests we are convinced. The boy ate 5, yes 5 pancakes on Sunday morning!! (yes they were "silver dollar pancakes, but still!) .
I have tried to capture the "calling of Louise" and "Connor Dance" on video below.
Thursday, April 16, 2009
Tuesday, April 07, 2009
Some Answers, Some More Questions
Just as my home state Spartans lost last night, I am feeling a bit defeated as well...
We started at 1pm with the Kidney Ultrasound, I always chuckle to myself when they do this US and they scan his right side like that Kidney is just going to magically appear one day. Of course I really shouldn't snicker about it, but I think it helps to lighten the mood. Cameron enjoyed his ultrasound, he helped the technician move it around and even had "doggie" help out moving it around, it was all rather adorable, as far as Kidney Ultrasounds go.
Our schedule 2pm appointment started at sometime after 3pm, I lost track, which I think is best rather than stewing over the incessant waiting game.
Let me just preface this all by saying that I was truly expecting to walk into the urology appointment and hear that the CMG (icky bladder study) looked stable. Not just because I hoped for that, but because all of our other appointments seemed to be leading to that answer.
Silly Mommy, as Cameron might say. It appears as though we have a new QUESTION/CONCERN/ISSUE - whatever you want to call it... The CMG shows his pressures are a bit higher than September, and the perplexing issue is a strong bowel contraction that shows up on the test. According to Dr. Yerkes, this is not typical and peculiar. Normally she'd chalk it up as constipation, but for Cameron this is FAR from the case. I am going to spare everyone the details of this discussion but I have been charting his bowel/bladder patterns since January and it's not an issue for him.
So you could tell Dr. Yerkes was really confused by this result and wasn't sure what to do, she went out to consult with Dr. Bowman (nuerosurgeon), Yerkes said she doesn't want to put him through surgery for a potential retethering of the cord, when that may not be it, and Dr. Bowman feels very strongly that's not what is going on here.
All that being said this is our action plan, for the next two weeks we are to change Cameron's diet, reduce fruits/veggies, load him up on carbs, cheese, bananas, limit fiber etc. So basically a diet of junk food! I am not at all excited about this prospect. I went out tonight and bought WONDER bread, I think it's been 15 years since I've been near that stuff. Obviously I'm not concerned about Cameron gaining too much weight, but I am not excited about letting him enjoy all the junk food there is...we are pretty lax when it comes to this sort of thing but he loves his fruit so it's going to be interesting. And if in 5 years from now you see my child eating "crap" don't shake your head at me, the Dr. made me do it.
The idea is hopefully this will change some of his bowel patterns/issues. If after 2 weeks we do not see a change we are to start giving him suppositories - OH JOY! Anyone with experience giving an almost 3 year old a suppository??
I am hoping we don't get to this point for obvious reasons. We will be checking in with urology regularly to update them on our "status". This treatment will go on for 3 months and we will repeat the CMG test in late July to compare results.
The hope is this last test was a fluke and next time it's back to stable. Although I am skeptical because he was a champ during the last test, no crying, had a bm that morning, overall it couldn't have gone better in terms of his participation outwardly.
So more waiting...I really never expected to be hit with another question, I mean could there be anymore? A potential diagnosis, a neurogenic bladder. I am just starting to research this. I am sure by our July appointment I'll have another 3 page list of questions. (Those Dr's love me!)
Then we began with Dr. Bowman, it was 4pm, Cameron was of course flying off the wall by this point. I implemented my new plan and had the Dr evaluate him first, which she did and Dad and Cameron then took off. The Dr. and I went through a long discussion and she thinks it's very unlikely their is an issue with the cord. Shunt issue also unlikely, but the muscle test Cameron had two weeks ago did come back showing decreased strength from his previous test so we are to share this report with our at home PTs and discuss further. If they are in agreement on the decrease then Bowman will consider a shunt revision-- possibly. I can tell you right now our PTs are not going to agree on the decrease in strength, but we shall see as there is somewhat of a question about how much the braces could be masking.
Dr. Bowman also copied one of my pages of questions and promised to find me a Dr who could answer or evaluate some of the questionable behaviors, development we are seeing in Cameron. (Thank you, thank you, thank you!!!)
I was going through Cameron's "looking up and away" patterns and as I was explaining I could see her wheels turning,I know she's thinking seizure. She asked me "has he had an EEG?" he has not, and it's not a seizure we both agreed after we discussed that I can get him to stop the behavior. Regardless it's puzzling.
Ultimately, this behavior, the clonus in his feet, the bladder, the delays, the recession the country is in, all can be summed up in "Cameron's brain is wired differently"
Good news brain and spine MRI are stable, no immediate surgical intervention needed. What the next 3 months hold it's hard to say, but 2009 is turning into quite the waiting game.
On a side note if anyone has any connections at Shriner's Hospital pleas email me.
Thanks!
We started at 1pm with the Kidney Ultrasound, I always chuckle to myself when they do this US and they scan his right side like that Kidney is just going to magically appear one day. Of course I really shouldn't snicker about it, but I think it helps to lighten the mood. Cameron enjoyed his ultrasound, he helped the technician move it around and even had "doggie" help out moving it around, it was all rather adorable, as far as Kidney Ultrasounds go.
Our schedule 2pm appointment started at sometime after 3pm, I lost track, which I think is best rather than stewing over the incessant waiting game.
Let me just preface this all by saying that I was truly expecting to walk into the urology appointment and hear that the CMG (icky bladder study) looked stable. Not just because I hoped for that, but because all of our other appointments seemed to be leading to that answer.
Silly Mommy, as Cameron might say. It appears as though we have a new QUESTION/CONCERN/ISSUE - whatever you want to call it... The CMG shows his pressures are a bit higher than September, and the perplexing issue is a strong bowel contraction that shows up on the test. According to Dr. Yerkes, this is not typical and peculiar. Normally she'd chalk it up as constipation, but for Cameron this is FAR from the case. I am going to spare everyone the details of this discussion but I have been charting his bowel/bladder patterns since January and it's not an issue for him.
So you could tell Dr. Yerkes was really confused by this result and wasn't sure what to do, she went out to consult with Dr. Bowman (nuerosurgeon), Yerkes said she doesn't want to put him through surgery for a potential retethering of the cord, when that may not be it, and Dr. Bowman feels very strongly that's not what is going on here.
All that being said this is our action plan, for the next two weeks we are to change Cameron's diet, reduce fruits/veggies, load him up on carbs, cheese, bananas, limit fiber etc. So basically a diet of junk food! I am not at all excited about this prospect. I went out tonight and bought WONDER bread, I think it's been 15 years since I've been near that stuff. Obviously I'm not concerned about Cameron gaining too much weight, but I am not excited about letting him enjoy all the junk food there is...we are pretty lax when it comes to this sort of thing but he loves his fruit so it's going to be interesting. And if in 5 years from now you see my child eating "crap" don't shake your head at me, the Dr. made me do it.
The idea is hopefully this will change some of his bowel patterns/issues. If after 2 weeks we do not see a change we are to start giving him suppositories - OH JOY! Anyone with experience giving an almost 3 year old a suppository??
I am hoping we don't get to this point for obvious reasons. We will be checking in with urology regularly to update them on our "status". This treatment will go on for 3 months and we will repeat the CMG test in late July to compare results.
The hope is this last test was a fluke and next time it's back to stable. Although I am skeptical because he was a champ during the last test, no crying, had a bm that morning, overall it couldn't have gone better in terms of his participation outwardly.
So more waiting...I really never expected to be hit with another question, I mean could there be anymore? A potential diagnosis, a neurogenic bladder. I am just starting to research this. I am sure by our July appointment I'll have another 3 page list of questions. (Those Dr's love me!)
Then we began with Dr. Bowman, it was 4pm, Cameron was of course flying off the wall by this point. I implemented my new plan and had the Dr evaluate him first, which she did and Dad and Cameron then took off. The Dr. and I went through a long discussion and she thinks it's very unlikely their is an issue with the cord. Shunt issue also unlikely, but the muscle test Cameron had two weeks ago did come back showing decreased strength from his previous test so we are to share this report with our at home PTs and discuss further. If they are in agreement on the decrease then Bowman will consider a shunt revision-- possibly. I can tell you right now our PTs are not going to agree on the decrease in strength, but we shall see as there is somewhat of a question about how much the braces could be masking.
Dr. Bowman also copied one of my pages of questions and promised to find me a Dr who could answer or evaluate some of the questionable behaviors, development we are seeing in Cameron. (Thank you, thank you, thank you!!!)
I was going through Cameron's "looking up and away" patterns and as I was explaining I could see her wheels turning,I know she's thinking seizure. She asked me "has he had an EEG?" he has not, and it's not a seizure we both agreed after we discussed that I can get him to stop the behavior. Regardless it's puzzling.
Ultimately, this behavior, the clonus in his feet, the bladder, the delays, the recession the country is in, all can be summed up in "Cameron's brain is wired differently"
Good news brain and spine MRI are stable, no immediate surgical intervention needed. What the next 3 months hold it's hard to say, but 2009 is turning into quite the waiting game.
On a side note if anyone has any connections at Shriner's Hospital pleas email me.
Thanks!
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