Time got away from me again! We moved in October, not far, just across town. Mommy has a job!!!!!! I'm so excited! We were blessed to be able to buy a new vehicle with help from a donation from my boss, of all people! Kai is scheduled for surgery on April 15 for his feet-little nervous...okay, a lot nervous!
Kai was diagnosed January 14 with nocturnal epilepsy. Updated diagnoses stand at: autism, ADHD, ODD, being watched for bipolar disorder, nocturnal epilepsy, asthma, allergies, CP, Von Willebrand's Disease, clubbed feet, tibial torsion, hip dysplasia, sensory processing disorder (sensory avoiding) and mixed sleep apnea. And he's only 3 and a half.
On Wednesday, we go in to test for a new medication for his VWD. I'm so excited-if this works for him, he can play sports potentially! So keep your fingers crossed, folks!
Taryn is getting his glasses on March 10th. And he was diagnosed with sensory processing disorder (sensory seeking) as well, and is on the neuro waiting list for possible absent seizures. :-( My poor little baby. But he has one heck of a vocabulary on him! He's so smart! He will be two in May, and my little Einstein speaks in complete, understandable even by total strangers sentences.
I ended my current college semester with a 3.8 GPA. I am planning to take a break until after Kai's surgery.
And so to the point of all this: Kai's surgery.
April 8th, he will go in to get a set of walking casts to help stretch out his muscles and tendons. April 15th, we will go in to Nemour's in Orlando for surgery to transfer tendons from point A to point B, which they are hoping will help release the tension in his legs and potentially enable his tibial torsion to fix itself instead of having to surgically break his legs and turn the bones. He will then be in bent knee casts for up to three months, after which he will receive physical therapy in order to stretch his muscles and learn to walk again. All in all, we are looking at a rough few months, possibly a rough year!
To answer anyone who may be curious, yes, Kai is aware of all his issues. He doesn't understand most of them, but he does know he has them. He does not try to use them as an excuse, and on the rare occasion that he does, he isn't allowed to get away with it. He is also well aware of his impending surgery, and is scared out of his mind about it. He fears casts-he has the memory of an elephant and still remembers spending the better part of his first couple years of life in them, and he is utterly terrified of anesthesiologists after his surgery when he was two. Lala is taking the day off work to come with us, and Aunt Sarah will be there as well, so hopefully he will feel a bit better about it. I know I won't!
I know some people will tell me (and several have already done so!) that surgeries like this are routine on kids like Kai and that his doctor knows what he's doing. To you, I say I don't care how many times Dr. Frick has done the surgery-the point is that he's never done it on my baby. So, thank you for your attempt at comforting me, but until he can look me in the eye and say "Nothing went wrong when we did this on your son before, and I feel confident in our hematologist and anesthesiologist and myself and our ability to ensure it goes smoothly this time too," it's a moot point. :)
Kai was diagnosed January 14 with nocturnal epilepsy. Updated diagnoses stand at: autism, ADHD, ODD, being watched for bipolar disorder, nocturnal epilepsy, asthma, allergies, CP, Von Willebrand's Disease, clubbed feet, tibial torsion, hip dysplasia, sensory processing disorder (sensory avoiding) and mixed sleep apnea. And he's only 3 and a half.
On Wednesday, we go in to test for a new medication for his VWD. I'm so excited-if this works for him, he can play sports potentially! So keep your fingers crossed, folks!
Taryn is getting his glasses on March 10th. And he was diagnosed with sensory processing disorder (sensory seeking) as well, and is on the neuro waiting list for possible absent seizures. :-( My poor little baby. But he has one heck of a vocabulary on him! He's so smart! He will be two in May, and my little Einstein speaks in complete, understandable even by total strangers sentences.
I ended my current college semester with a 3.8 GPA. I am planning to take a break until after Kai's surgery.
And so to the point of all this: Kai's surgery.
April 8th, he will go in to get a set of walking casts to help stretch out his muscles and tendons. April 15th, we will go in to Nemour's in Orlando for surgery to transfer tendons from point A to point B, which they are hoping will help release the tension in his legs and potentially enable his tibial torsion to fix itself instead of having to surgically break his legs and turn the bones. He will then be in bent knee casts for up to three months, after which he will receive physical therapy in order to stretch his muscles and learn to walk again. All in all, we are looking at a rough few months, possibly a rough year!
To answer anyone who may be curious, yes, Kai is aware of all his issues. He doesn't understand most of them, but he does know he has them. He does not try to use them as an excuse, and on the rare occasion that he does, he isn't allowed to get away with it. He is also well aware of his impending surgery, and is scared out of his mind about it. He fears casts-he has the memory of an elephant and still remembers spending the better part of his first couple years of life in them, and he is utterly terrified of anesthesiologists after his surgery when he was two. Lala is taking the day off work to come with us, and Aunt Sarah will be there as well, so hopefully he will feel a bit better about it. I know I won't!
I know some people will tell me (and several have already done so!) that surgeries like this are routine on kids like Kai and that his doctor knows what he's doing. To you, I say I don't care how many times Dr. Frick has done the surgery-the point is that he's never done it on my baby. So, thank you for your attempt at comforting me, but until he can look me in the eye and say "Nothing went wrong when we did this on your son before, and I feel confident in our hematologist and anesthesiologist and myself and our ability to ensure it goes smoothly this time too," it's a moot point. :)
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