Henry is gearing up to be a rock star like his dad.
Thursday, October 29, 2009
Thursday, October 15, 2009
Happy Birthday, Henry!
Henry turned three yesterday! He celebrated by bringing cupcakes to school, and he was excited about the gold crown his teacher gave him to wear. Unlike last year, when he was scared of his flaming Elmo cake, he LOVED his Cars cake, adorned with Lightening McQueen and Mater. We shared it with Juju, who is visiting from PA, and Filo, our cleaning lady. Andy is out of town until Friday, so we'll have another celebration then. I'll post some pics soon!
Henry is very verbal, and he talks like a regular person now, which cracks us up. He'll come up to us and say "C'mon, guys, let's go play this game!" He also remembers EVERYTHING, which is, of course, a blessing and a curse. He has many of his books memorized, and he loves to fill in the story when we pause. He continues to enjoy school and swim lessons. He was promoted to the Dolphin class a few weeks ago. (You didn't think his swimmer parents would let him slip up on that front, did you?) He's learning front crawl, and he can retrieve rings from the bottom of the pool.
Recently, Henry has dropped his usual three hour afternoon nap. I still try, but it's becoming increasingly clear that it's not happening. He has some quiet time in his room, and that's about it. He is pretty tired in the afternoon, so we put him to bed early at 7 or so. I was dreading the dropping of the nap, but, now that I have Mitch's naps to worry about, I am sort of relieved that I don't need to worry about getting Henry down.
We go to his three year well check next week, so I'll update his stats then. He's in 4T clothes, so I am guessing he's pretty high up there on the percentile for height!
Happy Birthday, sweet Henry!
Henry is very verbal, and he talks like a regular person now, which cracks us up. He'll come up to us and say "C'mon, guys, let's go play this game!" He also remembers EVERYTHING, which is, of course, a blessing and a curse. He has many of his books memorized, and he loves to fill in the story when we pause. He continues to enjoy school and swim lessons. He was promoted to the Dolphin class a few weeks ago. (You didn't think his swimmer parents would let him slip up on that front, did you?) He's learning front crawl, and he can retrieve rings from the bottom of the pool.
Recently, Henry has dropped his usual three hour afternoon nap. I still try, but it's becoming increasingly clear that it's not happening. He has some quiet time in his room, and that's about it. He is pretty tired in the afternoon, so we put him to bed early at 7 or so. I was dreading the dropping of the nap, but, now that I have Mitch's naps to worry about, I am sort of relieved that I don't need to worry about getting Henry down.
We go to his three year well check next week, so I'll update his stats then. He's in 4T clothes, so I am guessing he's pretty high up there on the percentile for height!
Happy Birthday, sweet Henry!
Tuesday, October 6, 2009
The Next Step
Today we had a full day at TCH. Mitch started his morning with a blood draw, isotope injection and DMSA renal scan. Finally, we got an idea of what the division of labor is between his kidneys. Not too surprisingly, the left kidney is doing most of the work (91%) and the right is only doing 9%. He then had another VCUG to check to see if the Posterior Urethral Valves were gone. The VCUG also shows us the reflux of urine back into his right kidney. After having our tests, we met with Dr. G. He is pleased with how well the left kidney is doing, and believes it can sustain Mitch. (You only need one good kidney, after all). The problem, however, is the reflux of urine that shoots back up into his right kidney everytime he "voids" (that's urologist-speak for "going pee"). In essence, his bladder is never fully emptying. This is bad for a few reasons. First, full bladders that don't fully empty are prone to UTIs and bladder infections. Second, his bladder is having to work extra hard to empty,which can have long term negative consequences (like losing the urge to go). We'll meet with the urologist and nephrologist together to discuss, but, right now it looks like Mitchell will have surgery to remove the right kidney. We don't know when--not until he's 6 months at least--but likely soon after. We'd rather just get it over with. Because his problem developed as a result of an issue that began in utero, his bladder and right kidney are sort of "trained" this way. He had never had reflux on the left side.
Obviously, the thought of facing a surgery that involves something as invasive as removing an organ is overwhelming. But, we know that the risk of it is outweighed by the long term reward for his overall urinary tract health. If all goes well, we should only be in the hospital overnight.
We meet with the nephrologist in two weeks, so we'll know more then. Thank you for all of your prayers.
Obviously, the thought of facing a surgery that involves something as invasive as removing an organ is overwhelming. But, we know that the risk of it is outweighed by the long term reward for his overall urinary tract health. If all goes well, we should only be in the hospital overnight.
We meet with the nephrologist in two weeks, so we'll know more then. Thank you for all of your prayers.
Wednesday, September 23, 2009
Predictions and Prognosis
I have never been one to buy into the phrase "everything happens for a reason." I mean, good and bad things happen to people. But, when I think about the fact that I am living in Houston, a place I never thought I'd be, and I have a baby who has kidney issues, I have to think there was some guiding hand that helped us end up here. Texas Children's Hospital is ranked #1 for Kidney disorders. We're in good hands. We had our appointment with the Nephrologist today. We loved her. She confirmed that Mitch has Renal Tubular Acidosis, so we'll be working to get his pH sorted out through a medication he takes three times a day. The tough part about today was just the reminder that there are a lot of unknowns with his health. She explained that his right kidney took the brunt of the damage, and his left looks a bit enlarged, still much better than the right. What is hard to know is what the future will be for that left kidney and whether it will continue to have enough function as he grows. There is no solid prognosis that we've been given, because there are many variables and things change. Right now, we're happy that his Creatinine is good and that he's gaining weight. Mitch goes back for a blood draw in a couple of weeks to ensure the dose of Bicitra is good. So the story is the same: Mitch will be followed closely for a long while. I think we've answered our question about whether we'll stay in Houston. We're in the best possible place for this to be happening, and we're lucky to have access to the best doctors around.
Tuesday, September 22, 2009
Heading to Nephrology
After talking to Dr. Gonzales yesterday, we're made an appointment to see Dr. Brewer in the Nephrology department. She'll manage Mitch's kidney issues from her end. Mitch is now on Bicitra, an antacid he takes 3 times a day. I have to mix it in an ounce of water and give it to him in a bottle. This means he's up to three meds a day: Bicitra, Bactrim (his antibiotic to prevent infection), and Zantac (for his GERd). We're becoming fast friends with the local CVS. (Actually, I am going to switch pharmacies. Note to Katyites: the CVS on Westheimer screws up our prescriptions too often and their service is poor.)
We have our visit with Dr. Brewer tomorrow. I am anxious to hear what she has to say. Mitch will have another blood test tomorrow to see if the Bicitra is working and to ensure his dose is accurate.
He really is such a trooper! He is all smiles!
We have our visit with Dr. Brewer tomorrow. I am anxious to hear what she has to say. Mitch will have another blood test tomorrow to see if the Bicitra is working and to ensure his dose is accurate.
He really is such a trooper! He is all smiles!
Sunday, September 20, 2009
Mixed Results
Mitch had some mixed results after his blood work on Monday. The good, and most important news, is that his Creatinine level is .24, an improvement from .35 after the first surgery. (The normal range is .2-.4). This number is very important because it tells us how well his kidneys are functioning. We are thrilled that this number continues to improve.
We did learn, however, that his Bicarbonate level is too low. This is problematic because it means his pH is off, which could be caused by Renal Tubular Acidosis, a condition not all that uncommon in boys who had PUV (Posterior Urethral Valves) like Mitch did. Of course, we found all this out at 5 o'clock on a Friday, so we are operating on little information. We do know that if he does have this condition, it is treatable with medicine. We are, of course, trying to understand what this means for Mitch and for us, and we'll know more once we sit down with Dr. Gonzales. For now, we are celebrating the great Creatinine number. If anything, we're reminded that PUV results in a lot of unknowns, so we're facing each challenge as it comes.
Mitch is such a happy, smiley baby. We know he'll be fine, but we sure would appreciate your positive thoughts and prayers.
We did learn, however, that his Bicarbonate level is too low. This is problematic because it means his pH is off, which could be caused by Renal Tubular Acidosis, a condition not all that uncommon in boys who had PUV (Posterior Urethral Valves) like Mitch did. Of course, we found all this out at 5 o'clock on a Friday, so we are operating on little information. We do know that if he does have this condition, it is treatable with medicine. We are, of course, trying to understand what this means for Mitch and for us, and we'll know more once we sit down with Dr. Gonzales. For now, we are celebrating the great Creatinine number. If anything, we're reminded that PUV results in a lot of unknowns, so we're facing each challenge as it comes.
Mitch is such a happy, smiley baby. We know he'll be fine, but we sure would appreciate your positive thoughts and prayers.
Thursday, September 17, 2009
Subscribe to:
Posts (Atom)