Just a quick note here. This gives me chills...
My sister, Gretchen (Gretel!), an accomplished Physical Therapist, was up to visit us yesterday. She was doing some work on her laptop and CeCe was sitting next to her in her Bumbo seat. Out of the corner of her eye, she saw CeCe point her feet and wriggle her toes. She said "Hey! She has Dorsal Flexion!"..or something like that. We had seen CeCe do this before and but didn't really KNOW what it meant. Gretchen put her few a few paces and said she's reflexing when she touches her toes and pushes back at her when she pushes her feet upwards. She seemed very excited about this and said CeCe seems to be responding at an S1-S2 level. I said that's great knowing there is also S3-S5 below that. So I asked..."well, what does that mean as far as feeling goes?" and she said "That's everything!".
Awesome.
Monday, May 23, 2011
Saturday, May 14, 2011
16lbs and 2oz of perfection!
Not gonna lie...Brian and I were amped up about this appointment. We didn't know what to expect from CeCe's first sb clinic. In reality, it was probably the best dr. appt we've EVER been to. Seven docs came in and out in about 2 hours...that's better than the wait time at most of their offices!
CeCe weighed in at a perfect 16lbs, 2oz and 26 inches long (tall?)...that puts her right in the middle at the 50th percentile. They also measured her head circumference and she was at 42cm...right where thay wanted her to be.
The first doc in was the nutritionist...her very first comment upon laying eyes on CeCe's roly-poly arms and thighs was "I see we have nothing to talk about!" HA!
Genetics came in next-all three of them were interested in our participation in the MOMs study...they had offered it to patients before but they had never met anyone that had participated. We shared our experiences with them and that was that. Since CeCe doesn't have any additional genetic issues, they really didn't have anything to say to us.
I was very concerned with what Urology would have to say. Brian had to take her in early on Friday to get a bladder and kidney ultrasound....these tests always put me on pins and needles...90% of sb kids need some kind of bladder/bowel management program due to their inability to empty them completely causing infections and kidney reflux. In the 1960s, when sb was first getting any real attention, many people passed away due to renal failure due to this reflux. Today, for instance, although CeCe hasn't yet shown signs of infection, she is kept on a daily, low-dose of amoxicillian to keep any uppity bacteria at bay....a minimal annoyance for potentially amazing results...but I digress. The ultrasound tech said her bladder was empty (though I've learned not to accept this until the docs have confirmed) and then...the doc confirmed...kidneys are PERFECT and she is voiding all on her own!!! The Urology doc is a funny little guy....he's always in a very self-important hurried state and posturing to anyone else in the room....but he gives her good care and that's all we ask (most of the time.)
Neuro came and went, no change, no issues.
Orthopedics (bone guy!) pretty much came and went. She hadn't been seen by one of these docs since NICU...he said she looked and moved great and believes (like we do) that she CAN feel parts of the bottoms of her feet and toes. He saw no issues that currently need to be addressed.
The last doc was Physical Medicine. I had never heard of this before and it was explained that they are sort of like Advanced Pediatrics. She made sure CeCe was doing all her baby stuff...following objects, moving her attention to whomever was speaking and double checked her PT exercises...She commented that CeCe should be about 15 years old to have led the life she's led already.
So, A GREAT DAY! We head back to this same environment in 3-4 months...remember, she missed her first two opportunities to go to clininc because she was laid up in the hospital.
One of the best parts was getting to meet two other famalies. We met an 8 month old girl who was not shunted and had no other issues since her back closure surgery...she looked great...already eating table food, feeding herself and trying to learn to crawl. We also met another mom with her 3 year old who had just moved to Hendersonville, NC from St. Louis...Charlotte is the closest place for her for neuro. Her little girl was SUPER cute and got around with both AFOs (ankle foot orthotics) and a wheelchair. She wheeled herself ALL over that place like a speed demon...never slowed down...not once!
Anyway, that's about it...CeCe has some work to do now...gotta keep everything moving and shaking. She starts school on Monday!
CeCe weighed in at a perfect 16lbs, 2oz and 26 inches long (tall?)...that puts her right in the middle at the 50th percentile. They also measured her head circumference and she was at 42cm...right where thay wanted her to be.
The first doc in was the nutritionist...her very first comment upon laying eyes on CeCe's roly-poly arms and thighs was "I see we have nothing to talk about!" HA!
Genetics came in next-all three of them were interested in our participation in the MOMs study...they had offered it to patients before but they had never met anyone that had participated. We shared our experiences with them and that was that. Since CeCe doesn't have any additional genetic issues, they really didn't have anything to say to us.
I was very concerned with what Urology would have to say. Brian had to take her in early on Friday to get a bladder and kidney ultrasound....these tests always put me on pins and needles...90% of sb kids need some kind of bladder/bowel management program due to their inability to empty them completely causing infections and kidney reflux. In the 1960s, when sb was first getting any real attention, many people passed away due to renal failure due to this reflux. Today, for instance, although CeCe hasn't yet shown signs of infection, she is kept on a daily, low-dose of amoxicillian to keep any uppity bacteria at bay....a minimal annoyance for potentially amazing results...but I digress. The ultrasound tech said her bladder was empty (though I've learned not to accept this until the docs have confirmed) and then...the doc confirmed...kidneys are PERFECT and she is voiding all on her own!!! The Urology doc is a funny little guy....he's always in a very self-important hurried state and posturing to anyone else in the room....but he gives her good care and that's all we ask (most of the time.)
Neuro came and went, no change, no issues.
Orthopedics (bone guy!) pretty much came and went. She hadn't been seen by one of these docs since NICU...he said she looked and moved great and believes (like we do) that she CAN feel parts of the bottoms of her feet and toes. He saw no issues that currently need to be addressed.
The last doc was Physical Medicine. I had never heard of this before and it was explained that they are sort of like Advanced Pediatrics. She made sure CeCe was doing all her baby stuff...following objects, moving her attention to whomever was speaking and double checked her PT exercises...She commented that CeCe should be about 15 years old to have led the life she's led already.
So, A GREAT DAY! We head back to this same environment in 3-4 months...remember, she missed her first two opportunities to go to clininc because she was laid up in the hospital.
One of the best parts was getting to meet two other famalies. We met an 8 month old girl who was not shunted and had no other issues since her back closure surgery...she looked great...already eating table food, feeding herself and trying to learn to crawl. We also met another mom with her 3 year old who had just moved to Hendersonville, NC from St. Louis...Charlotte is the closest place for her for neuro. Her little girl was SUPER cute and got around with both AFOs (ankle foot orthotics) and a wheelchair. She wheeled herself ALL over that place like a speed demon...never slowed down...not once!
Anyway, that's about it...CeCe has some work to do now...gotta keep everything moving and shaking. She starts school on Monday!
Friday, May 6, 2011
ENT and School Update
CeCe had her latest ENT follow-up this morning. The good doctor, of course, wanted to scope her to check out her vocal cord movement and was pleased with what he saw. Her left cord is moving purposefully and functionally and her right is improving, although it's still not back to normal...yet. He expressed that he did think this would return in time, on it's own. He also said he has several patients that live just fine only having one functioning vocal cord. Then he added, very solemnly and dramtically...that although her speaking voice should be fine, she may have trouble hitting "the high notes" when singing. Ummmm, whaaaa? Brian and I burst out laughing at this one...To a family who hears something like this about their child for the first time, I can imagine that is may be tough to hear. To us? Excuse the pun....this was music to our ears! If this is all Little Miss has to deal with, we are ecstatic! Aside from the genetic impossibilities herein, there goes her diva opera career...or maybe she'll just have to be an alto! He didn't mean for this bit of news to be humorous...but it certainly was...to us. All in perspective, my good man, all in perspective.
Sooooo, all that said....CeCe has now been given a great big, giant, jolly green light to start "school" on Monday the 16th....which also means Mr. Mom is headed back to work. Boo! When asked how I feel about this as our new reality, my answer is...medium. The ENT said it best.."it's time to move on with all your lives and she can't live in a bubble"....so, to school she goes and we'll see how it goes. I bet she rocks that baby room...afterall, she's so worldly!
Sooooo, all that said....CeCe has now been given a great big, giant, jolly green light to start "school" on Monday the 16th....which also means Mr. Mom is headed back to work. Boo! When asked how I feel about this as our new reality, my answer is...medium. The ENT said it best.."it's time to move on with all your lives and she can't live in a bubble"....so, to school she goes and we'll see how it goes. I bet she rocks that baby room...afterall, she's so worldly!
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