Towards the end of January, Carter had an incredibly important appointment; urology, the one appointment that I have come to dread. This is the appointment where Carter gets an ultrasound of his kidney's to be sure that they are looking good and healthy, are the right size, and are not getting infections, which can cause serious issues. From the kidney ultrasound we head to the 4th floor to see Carter's doctor in Urology and Carter gets a CMG.
For a CMG, Carter has to have a catheter put into his body and then fluid (like saline solution) is input into his bladder to see if he is able to release all of the fluid out on his own as well as checking the pressure he exurts on his bladder. If Carter cannot release all of the fluid out it can cause an issue which would mean he would need a catheter and if he uses too much pressure while pushing, his bladder could explode which is a major issue and can cause weeks in the hospital.
The last time Carter had this test done he HATED it. I don't mean he was a little squirmy but got used to it, I mean he was moving everywhere he could, the catheter was falling out and had to constantly be put back in, he was hungry, tried, and overall hating life at the time, and I couldn't blame him for that. I wouldn't want people doing that to my body either! For his first test we were told that his bladder pressure levels were pretty high and that it might be a cause for concern. I was told that if at his next appointment the numbers didn't go down, it would be more than likely we would have to start cathing him and to be perfectly honest, I'm terrified of that so this appointment, I was petrified.
However, this time around, Carter was AMAZING! Now by this time in the day, he was pretty tired and luckily I had his sippy cup and some vanilla wafers for him to enjoy (what a miracle those little cookies can be). As he lay there he didn't even flinch when the nurse put the catheter in and then started to set everything up. He continued to lay still while he inserted the fluid and was completely still for almost 10 minutes while completing this testing which I was really hoping would be a good thing. In my mind I figured, the first time he was squirmy, so maybe that's why the numbers were so high and if he's calm today it's possible the numbers could go down... right?
The nurse pulled out the catheter, and told us that he could relax until his urologist came in to talk to us about his results of both tests. We spent another 10 minutes or so listening to music and reading books until we were greeted by the doctor. We said our hellos and got right down to business, this was it; was it time to cath?
His kidney's looked great! They were a good size and although one kidney is a little larger than the other they are working well, fluid is going in and out of them well, and she was happy with his kidney function, one sigh of relief. Then it was time to talk about the CMG, here is goes...
His test was PHENOMINAL!!! His doctor was so impressed that his numbers had gone down so much. She said that she had no idea how they went down as much as they did (his first round numbers were about 30 and his highest number this time around, was 12), but that she was so happy to see that he isn't using too much pressure to pee on his own. This was such a relief to hear because it means that Carter, for now, can continue to be Cath free! I may be overusing my exclamation points right now but I do not care, this was a big deal for our family and for Carter and I was thrilled that it had gone so well. In fact, it was better than that because we were told that, baring any UTI's (which he has never had) he doesn't need to be seen by urology for a year!!! That's right, Carter is Cath free for one more year and (we continue to pray) that at his next test in about 10 more months he will do amazing once more, but until then, we will celebrate this huge victory for Carter and let him continue to pee in his diaper like any other 16 month old child would do.
Just last week Carter had another big appointment; Physical Medicine & Rehabilitation. Mike was lucky enough to go to this appointment and to talk to Carter's doctor about his leg mobility and function and to see where we need to go next when it comes to moving and possibly walking. Carter does have his own gate trainer that we can strap him into and he walks around and he loves it. I think getting the chance to walk around and to not have to hold onto things gives him a sense of freedom around the house.
At his appointment we had to discuss the fact that Carter's braces aren't really working for him. His right ankle twists in so much that when he stands you would think his foot is broken, even with the braces. It's not actually clubbed but instead he has what is called, Tibia Torsion. The twisting is coming from his knee which causes his foot to twist inward. The braces do not help keep his foot straight and when he crawls in them or tries to stand, his right heel doesn't stay down into the brace and eventually they slide right off. Basically, it doesn't help stabilize his legs to help him stand up without holding onto anything which is what we are trying to work on.
He currently pulls to stand up without his braces, can walk along the furniture and tables without his braces, and is getting a little daring by trying to let go of the couch while he stands; which he holds himself up for about 2-3 seconds before falling on his butt.
At the appointment we were told that with Tibia Torsion it either fixes itself or surgery would be needed. However, with Carter being at such a young age the doctors would like to wait and see if this will fix itself because the surgery is long, painful, and Carter would be in a cast for quite some time, which we don't want to have happen so for now, we wait. In fact, we were told that if he didn't have this issue he would probably be walking right now, which is great that we hear how much the doctors believe he will walk independently but also is a bit of a bummer because we wish, for him, he could be doing that now.
At this appointment we were also told that because Carter hadn't had an X-ray of his hips done since birth, he would need another X-ray to make sure his hips are not popping in and out of the sockets. Mike had to take him to get it done and I was told that Carter was not a fan of this at all (again, can you blame him?). We got a phone call the next day and were told that his hips look beautiful and that everything looks great, no issues when it comes to the hips.
In the meantime we are going to have to come up with a plan with Carter's PT to work on a way to get that knee and foot to straighten out and to help teach Carter how to "fix his foot" when he is sitting, standing, or walking in his gate trainer. Luckily, he has learned how to "fix your feet" when he is sitting and he pulls his legs out from under him to sit with his legs in front when we ask him to. The rest, we hope, will come in time.
For a CMG, Carter has to have a catheter put into his body and then fluid (like saline solution) is input into his bladder to see if he is able to release all of the fluid out on his own as well as checking the pressure he exurts on his bladder. If Carter cannot release all of the fluid out it can cause an issue which would mean he would need a catheter and if he uses too much pressure while pushing, his bladder could explode which is a major issue and can cause weeks in the hospital.
The last time Carter had this test done he HATED it. I don't mean he was a little squirmy but got used to it, I mean he was moving everywhere he could, the catheter was falling out and had to constantly be put back in, he was hungry, tried, and overall hating life at the time, and I couldn't blame him for that. I wouldn't want people doing that to my body either! For his first test we were told that his bladder pressure levels were pretty high and that it might be a cause for concern. I was told that if at his next appointment the numbers didn't go down, it would be more than likely we would have to start cathing him and to be perfectly honest, I'm terrified of that so this appointment, I was petrified.
However, this time around, Carter was AMAZING! Now by this time in the day, he was pretty tired and luckily I had his sippy cup and some vanilla wafers for him to enjoy (what a miracle those little cookies can be). As he lay there he didn't even flinch when the nurse put the catheter in and then started to set everything up. He continued to lay still while he inserted the fluid and was completely still for almost 10 minutes while completing this testing which I was really hoping would be a good thing. In my mind I figured, the first time he was squirmy, so maybe that's why the numbers were so high and if he's calm today it's possible the numbers could go down... right?
The nurse pulled out the catheter, and told us that he could relax until his urologist came in to talk to us about his results of both tests. We spent another 10 minutes or so listening to music and reading books until we were greeted by the doctor. We said our hellos and got right down to business, this was it; was it time to cath?
Waiting for our results!
His kidney's looked great! They were a good size and although one kidney is a little larger than the other they are working well, fluid is going in and out of them well, and she was happy with his kidney function, one sigh of relief. Then it was time to talk about the CMG, here is goes...
His test was PHENOMINAL!!! His doctor was so impressed that his numbers had gone down so much. She said that she had no idea how they went down as much as they did (his first round numbers were about 30 and his highest number this time around, was 12), but that she was so happy to see that he isn't using too much pressure to pee on his own. This was such a relief to hear because it means that Carter, for now, can continue to be Cath free! I may be overusing my exclamation points right now but I do not care, this was a big deal for our family and for Carter and I was thrilled that it had gone so well. In fact, it was better than that because we were told that, baring any UTI's (which he has never had) he doesn't need to be seen by urology for a year!!! That's right, Carter is Cath free for one more year and (we continue to pray) that at his next test in about 10 more months he will do amazing once more, but until then, we will celebrate this huge victory for Carter and let him continue to pee in his diaper like any other 16 month old child would do.
Just last week Carter had another big appointment; Physical Medicine & Rehabilitation. Mike was lucky enough to go to this appointment and to talk to Carter's doctor about his leg mobility and function and to see where we need to go next when it comes to moving and possibly walking. Carter does have his own gate trainer that we can strap him into and he walks around and he loves it. I think getting the chance to walk around and to not have to hold onto things gives him a sense of freedom around the house.
Carter & his cousin, Eli playing at the gym :)
At his appointment we had to discuss the fact that Carter's braces aren't really working for him. His right ankle twists in so much that when he stands you would think his foot is broken, even with the braces. It's not actually clubbed but instead he has what is called, Tibia Torsion. The twisting is coming from his knee which causes his foot to twist inward. The braces do not help keep his foot straight and when he crawls in them or tries to stand, his right heel doesn't stay down into the brace and eventually they slide right off. Basically, it doesn't help stabilize his legs to help him stand up without holding onto anything which is what we are trying to work on.
He currently pulls to stand up without his braces, can walk along the furniture and tables without his braces, and is getting a little daring by trying to let go of the couch while he stands; which he holds himself up for about 2-3 seconds before falling on his butt.
Just brushing his teeth against the couch
At the appointment we were told that with Tibia Torsion it either fixes itself or surgery would be needed. However, with Carter being at such a young age the doctors would like to wait and see if this will fix itself because the surgery is long, painful, and Carter would be in a cast for quite some time, which we don't want to have happen so for now, we wait. In fact, we were told that if he didn't have this issue he would probably be walking right now, which is great that we hear how much the doctors believe he will walk independently but also is a bit of a bummer because we wish, for him, he could be doing that now.
At this appointment we were also told that because Carter hadn't had an X-ray of his hips done since birth, he would need another X-ray to make sure his hips are not popping in and out of the sockets. Mike had to take him to get it done and I was told that Carter was not a fan of this at all (again, can you blame him?). We got a phone call the next day and were told that his hips look beautiful and that everything looks great, no issues when it comes to the hips.
In the meantime we are going to have to come up with a plan with Carter's PT to work on a way to get that knee and foot to straighten out and to help teach Carter how to "fix his foot" when he is sitting, standing, or walking in his gate trainer. Luckily, he has learned how to "fix your feet" when he is sitting and he pulls his legs out from under him to sit with his legs in front when we ask him to. The rest, we hope, will come in time.
Relaxing in his chair
I am so glad that Carter is doing so well, even with maybe not as fast as you would like, but better than probably the doctors had predicted, which is good. Thanks for the update. Carter is one of my favorite little boys. Love you all. You are great parents. AC
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