Goodness~I am so behind in updating this thing. Seems like life has been INSANE lately. A couple weeks ago, Sam had to go to Baltimore for work and I went with him. It was SO much fun and I couldn't wait to write something FUN on my blog instead of always updating about my kids' health! SIGH no such luck apparently. We got back really late on a Friday night and had a Bible conference all day Saturday and Sunday. This momma was pooped! Then on Monday, Claire had another seizure. Again, no warning, and again we were in the car. Not sure if there is relation to being in the car or what, but it is what it is. This seizure was different than the first. I looked in my rearview mirrow and she was leaned over her carseat with her head on the regular seat. She didn't respond when I called her, so I pulled the car over and lifted her head up. She looked like she was mentally handicapped. Her eyes were really blank looking and she was drooling out of the corner of her mouth. I was much calmer this time and didn't freak out at all. I moved her to the middle seat of the van and buckled her in just in case she would start convulsing again like she did last time. I just kept talking to her and when I could see that she was coming out of it, we headed to the dr. We were in the waiting room and she threw up all over me (turns out that is a side effect as well...lesson learned-after seizure, have bucket handy!). I do NOT do barf well at ALL, so this was huge. I was holding her so she actually threw up down the inside of my sweatshirt. It was so disgusting. Plus we had to wait forever while we were waiting for Des Moines to call our dr back so we just had to sit there smelling like vomit. Thankfully we were in a room, so we didn't kill anyone else with our odor. Claire pretty much fell asleep right away. I had taken off her pants and sweatshirt so she wasn't too bad. Our dr gave me a gown top to wear eventually since we were waiting so long. It looked so stylish let me tell you. I didn't care though, at least I didn't smell like vomit anymore!
Long story short, Claire's neurologist called the next morning and said she wanted her to come in for another EEG and a visit with her on Thursday. The EEG went good-Claire did great again-fell asleep when they told her to and the whole nine yards. I was very proud of her. Dr. Narawong said that since there were 2 seizures so close together, it wasn't an "idiomatic" seizure. The EEG was clear so from what I understand that means she does not have Epilepsy, which is a huge relief. Claire was diagnosed with a seizure disorder. They put her on medicine and when she goes 2 years without a seizure then they will try weaning her off of it. So from what I can gather, they are hoping she will outgrow them. We had a TERRIBLE time finding the right medication, only to find out they don't MAKE the meds we need in a liquid generic form and we can't pay boatloads of money every month for namebrand, so we gave the pills a try. I just crush it up and put it with applesause in the whale spoon (a VERY hot ticket item in our house! :)) and she takes it like a CHAMP! So proud of that little girl and how well she is dealing with all this. What a little trooper!
Yesterday, Kai had an appointment in Iowa City scheduled to meet with a urologist and do some testing. Dr. Menezes had requested it, so off we went. Heather met me in Cedar Rapids to be with me for the day. I was SO glad she was there. Not only to help with a very active little turkey :) but also because we don't get too much time to chat uninterrupted these days with 7 kids between us! :) We met another friend for lunch before the drs appt, so that was a lot of fun too. First up for my little man was an ultrasound of his kidneys and bladder. He did pretty good considering it was about 1:00 and he hadn't taken a nap at all that day! He was a little wiggly, but I did the holding and Aunt Heather did the distracting and it worked out pretty good. Then it was off to do a test called "urodynamics" (Obviously, I am not a medical person, so please excuse my bad spelling if that isn't right! :)) Basically what that is, is that they put a catheter in him and pump him full of fluid so they can see how he pees. He did fantastic. He didn't even fuss when they put the cath in. The nurse commented that that isn't normal, so we are wondering if he doesn't have any feeling in his little peepee either. There was a resident dr in the room and he was a great help keeping Kai distracted and laying flat. They take x-rays of the bladder as they are doing the test so he had to be still and lay on his back the whole time. Eventually my poor tired baby just fell asleep, so that was good. However, the news we got was not. A normal bladder for a baby of Kai's size would hold about 90 cc's (I think that was the measure they used...something like that) of fluid. The nurse doing the test stopped putting fluid in at 200. He had more than double the amount of fluid in his bladder and he did not pee at all. She had to take it all back out using the catheter.
After all the tests, we headed up to meet with Dr. Cooper who is a peds urologist. He seems like a very nice, very knowledgable guy and I liked him right away. By this time, Kai was awake from his short nap and raring to be OUT of his stroller. Super Aunt to the rescue! :) She offered to take Kai to the waiting room to look at the fish and let him move for a while so I could talk to Dr. Cooper. I was so glad for her help. Dr. Cooper said that basically Kai's bladder was not contracting to push the urine out. He said probably what was happening is that the pressure builds up in Kai's bladder and as he moves and crawls and wiggles, it just leaks out. His kidneys both looked good and there was no reflux back into them, so that is very good news. It's probably as a result of the detethering surgery. Sometimes the nerves go into shock as he called it. It can take a while for them to come back. However, he said it usually takes about 3 months, so we are past that. My mom pointed out that it's JUST 3 months tho, so I'm not completely giving up hope yet. The plan for right now is that we go back every 3 months for ultrasounds of his kidneys and then another urodynamic test in 1 year and cross our fingers and pray for improvement!
SIGH....more doctors appointments! Honestly my life completely revolves around them right now and I HATE it! Kai is now seeing a surgeon, a neurosurgeon, a GI doctor, a urologist, and an ENT-not to mention the regular "well-baby" visits and normal visits. Add in all of Claire's tests and neurologist visits, and the other kids visits to the ENT for tube check ups, and then 3 other kids sick and well child visits to our doctor and you can see why my life revolves around doctors appointments. Sometimes I just get overwhelmed thinking about what's ahead and feel like bawling my eyes out. Last night after we got home, I told Sam that just needed to go to bed. It was earlier than we normally go to bed, but I said it's either that or I just start sobbing and you have to deal with an emotional crazy woman! He chose bed! :)
This morning when I woke up I still feel overwhelmed thinking about what's ahead, but I'm ok. I am watching my babies play. Kai is walking and crawling and talking and doing all that he's supposed to be doing. Claire is just her normal spunky self and it's obvious that, even while they are fighting, that they all love each other. A very wise friend reminded me last night to just take one day at a time and let tomorrow take care of itself. Plus, God has sometimes funny ways of reminding me to have faith. My kids were watching a VeggieTales movie last night while I was telling Sam about the day and one of the songs that they LOVE (therefore repeating 6 milllion times) on this particular movie goes something like this "God is bigger than the boogie man! He's bigger than Godzilla or the monsters on TV! Oh, God is bigger than the boogieman and He's watching over you and me." I need to just keep reminding myself that God IS bigger than anything and He IS watching over us and while for the life of me I can't figure out why, God is allowing us to go thru these trials. It's not up to me to know why, I just need to keep having faith. This is most DEFINITELY NOT easy, but I'm trying. We very much appreciate your prayers for our family.
One of these days, I'm going to post my vacation pics and blog about HAPPY things! :)