Monday, September 23, 2013

Todays Results...

I don't even know really where to begin this post. Today didn't turn out like I had hoped and I'm still trying to wrap my brain around it. I guess the best place to start is at the beginning!
First up this morning was a kidney ultrasound. Kai was a little hesitant at first, but once we got going, he did awesome. He just laid there so good while the tech did her thing. I think he was a little worried that it was going to hurt but once we got going he looked at me and smiled and said "dat tickles Momma!" We had some time before the urodynamic test, so we grabbed some lunch and watched the diggers for a while. They are building a new Children's Hospital, so there is lots of construction which thrills my little man to no end!:) Then off to the urology lab for the test.
Basically what they do during a urodynamic test is see how much your bladder can hold before your bladder contracts and you pee. They take x rays of your bladder and record all sorts of squiggly lines on a computer monitor.  Kai had to lay on the lab table for a REALLY long time, but again, he did amazing. The techs were SUPER and did a great job of keeping him distracted with bubbles and sparkly wands that eventually were turned into dueling swords-he's such a boy! :) He did start to fuss just a bit just as they were about done, but in his defense, it was naptime and it had been a pretty long test. Mommy caved and let him have his pluggy and the Kindle, so he was happy until they were done. Once we got out of there, we headed to the Pediatric Specialty Clinic to see Dr. Cooper. We had to wait a REALLY long time, so Kai finally crashed and ended up taking a pretty good nap. Well, pretty good for a doctors office/testing day, but a nap none the less. :) Daddy managed to get one in too, and Mom was thankful I had just downloaded a new book on my Kindle.
Once we got into to see Dr. Cooper, he immediately told us that the test results were not good. Kai's bladder should normally hold around 120 ml. Today his bladder held 450 ml. That's almost 4 times what it should. Dr. Cooper said Kai's bladder never completely empties. The urine just dribbles out as he moves around. And now, since his bladder is so full all the time it's starting to put pressure on his kidneys and that is a bad thing, so now we have to do what is called intermittent catheterization. 3 times a day we have to cath him to drain his bladder and we'll see what we happens in 3 months when we go back for another kidney ultrasound. Not at all what I wanted to hear. To be honest, after Dr. Cooper left, I cried. I know that I have so much to be thankful for, but it is just so hard to hear that there is something wrong with your baby. Something that will affect him for the rest of his life. Before he left though, Dr. Cooper was VERY sweet. He said he knew this had been a tiring day for us, and that what he had told us was a lot to process. He said we could come back to do the catheter training if we wanted, but I didn't want to make another trip so he called the nurse. She had us practice a couple of times, which went much better than I had anticipated. It's definitely NOT something I relish doing but I think I can handle it. Luckily Kai has no sensations at all in his "boy parts" so I don't even know if he realized that we were doing a catheter. That makes it MUCH easier for me because if I felt like I was hurting him, it would make it so much harder to do. Thank you all for your kind words, texts, and prayers. They really mean a lot and if you could continue to pray, that would mean the world to me. Hopefully this all makes sense :) because I didn't get a lot of sleep last night and my brain is SO tired right now. I will do a re-read in the morning and hopefully fix any mistakes! LOL!

To IA City for More Testing - Prayer Request

It's been a while since I've done a prayer request, but I am going to do one now. Tomorrow we head to Iowa City with Kai again. AAANNNDDD since I can never sleep on the night before big appointments, I figured I might as well update my blog! Most of you are aware that since the surgery to correct his tethered spinal cord, his bowel and bladder functions have not been what they should be. Basically, from what I understand, his bowel and bladder muscles and the associated sphincters do not work in unison like a normal persons would. For example, when a normal person goes to the bathroom, their bladder contracts and the sphincter relaxes so they can empty their bladder and then when they are finished the sphincter contracts and the bladder relaxes. (Medical people, please correct me if I am not right, cuz this stuff can get pretty confusing.) Kai's body doesn't work like that. Somehow during that surgery, some damage must have been done to the nerves. Now, I am NOT saying that his doctor did any damage or anything of that nature. We were told that when that cord was released it was just like a rubber band snapping back-there was THAT much tension on it. So when you go from that much tension to releasing it, there is bound to be some damage. Shortly after his spinal surgery, a little over a year ago, they did a urodynamics test on him, where basically they see how much fluid they can put into his bladder before he would start peeing. His body was supposed to hold around 90cc of fluid. The tech stopped putting fluid in at a little over 200cc. He still hadn't peed, so they had to take it all out with a catheter. Since then we have been going every 3 months to see a peds urologist who does ultrasounds of his kidneys to make sure that urine isn't refluxing back into them, and all of those have thankfully been clear. He also has not had any urinary tract infections which are another indicator of bad stuff happening. So we do have stuff to be thankful for. The way it was explained to me was that as he moves around, etc it causes the urine to kind of leak out. This has really not been an issue since he obviously wears diapers and it's no big deal. Now we are getting to the age where I would normally kind of start potty training, but how in the world do you potty train the child who has no control at all? Potty training is hard enough when they do!! :) So that is kind of tough for this momma's heart. When he was little and the diapers were obvious it's not such a big thing. But as he is growing up, it's becoming more obvious that he has disabilities and I don't think any parent WANTS their child to be disabled in any way, shape, or form, so that is going to take some getting used to on my part. It's tough to think about things like sending him to preschool not wearing big boy undies like the other kids, and having to try to figure out when the right time to start doing catheters is, if it comes to that. It's having to try to figure out the perfect balance of Miralax and food so that his stools are soft enough that they come out, but not so much that he has diarrhea and worrying that kids can be mean to those that are slightly different. I have to keep reminding myself of all the good though. He is the smartest, funniest, most adorable little spitfire ever. He is running and jumping and climbing and riding scooters and trying to ride a bike like the big kids. There is not a THING wrong with that little smarty-pants's brain, and his smile is absolutely infectious. He loves his mommy and loves to play tackle and wrestle and crash things together. I am so blessed.
So now to the prayer request. Tomorrow Sam, Kai and I head to Iowa City. They are going to repeat the urodynamic test to see if there is any improvement, and that will also tell us if Kai has any feeling in his "boy parts" because at the last test, there was none. I am pretty sure I know what the outcome of the test is going to be, but to have it be official is going to be hard. It's almost like I can still pretend until I see it on paper or hear it from a doctors mouth. So if you would pray for my sweet little man that all his tests would go well and quickly and easily and painlessly, and for his mommy and daddy to make the right decisions if any need to be made and to ask the right questions. And maybe even a quick one for his Momma's heart to be strong? I know God is able, but I also know that sometimes His answer, even when we pray SO hard for it to be Yes, is No. I can't see the big picture, but He can, so that's where I am trying to place my heart. Thanks for the prayers~

Tuesday, September 17, 2013

Listen for the POP!!!

Tonight I did something that I have never done in my life. I canned. Granted, I watched my mom can all sorts of everything when I was growing up, and even helped her I'm sure. But "helping" as a kid and doing it all on your own as a grown up are two COMPLETELY different things I've come to learn! :) I remember thinking my mom was crazy for going to all that work when we could have just bought it, but I think I am beginning to understand. It's not just about the money, although the savings are pretty rewarding. It's no secret that homemade just tastes so much better, but it's more than that. It's the satisfaction of opening the freezer and seeing that homemade applesauce or wanting to make burritos and knowing that you have your own homemade salsa waiting in a jar on a shelf! And that's exactly what I did tonight. However, I did NOT do it all on my own. I may have called my mom more than once (or twice) and my awesome neighbor Sharon came over to help me with some chopping and doing the actual canning. I was SO glad for her knowledge, because me trying to do this on my own would NOT have worked!! :) I was literally nervous as we got butterflies in my stomach nervous. Then once we got going, I was seriously grinning like an idiot as I watched the jars line up, full of salsa! And then I started listening for the pop. I never really understood how exciting they are! For those of you that don't know, the "pop" is a good thing. It means your jars have sealed. I was listening for those pops like you wouldn't believe, and when they finally started coming, I felt like I had won something! LOL! I was SO excited, I just couldn't stop smiling! So Sharon, thank you SO much for all your wonderful help and advice and Mom, I take back every thought I had growing up that would were crazy when you would tell us all how many jars popped. I am going to be that mom too I think! :)  And now, I am going to go to bed. That was the other thing I didn't realize growing up. This stuff is hard work! :)