Wednesday, November 30, 2011

Report from the Neurosurgeon

Today was the big day. We had our meeting with the neurosurgeon, Dr. Menezes, today and it was kind of like we expected. He showed us the MRI scans which were really interesting to see. He showed us where the cord was tethered at the base of the spine and long story short, my baby is scheduled for surgery on January 20th. :( He said that it was a "simple" surgery, but let's remember this is coming from a world renown neurosurgeon so I'm not sure "simple" is the word I would use, but whatever. He said that sometimes with tethered spines the part that is tethered is the same color as the nerves so that makes it so much more difficult to fix, but Kai's is a different color, which we could see on the MRI, so that is good news. He explained how they use hair-thin wires that they run current thru to make sure what they are removing is only the fat and nothing of importance! :) There were a few interesting things also. One of the first things he looked at was Kai's feet. He pointed out that Kai's 2nd toe is slightly raised-kind of pulled back, it's hard to explain, but as soon as he noticed that, he said that that is a signal that there is something wrong with his spine! Wierd! They also did a little test-broke one of those long cotton swab things and poked the pointy part on his bum cheeks. Kai has no feeling at all in his bottom. It's so wierd! I never ever noticed but Dr. Menezes is right-he didn't flinch or anything when he got poked.
So we are scheduled to head to Iowa City on January 19th for a pre-op, lab work and an appointment with anesthesia, then surgery on the 20. The nurse said that Dr. Menezes blocked 4 hours for the surgery but I don't know how much of that is prep and how much is the actual surgery. They will keep him sedated for 48 hours after surgery because he needs to be on his tummy. Hospital stay will likely be 5-7 days.
Not quite sure how I feel about it at this point. It's good to have answers and to know that he is scheduled for surgery, but at the same time it's so scary that he actually this is REALLY going to happen! I like Dr. Menezes so that helps, but it's just so scary that my sweet little baby has to even go thru this. I am thankful though, that it seems as if once this surgery is over, the cord will not retether or anything of that nature, so that makes me feel better too. I was a bit freaked out by the wait time, but then realized that it will be ok after all. This will get us through the holidays and Claire's birthday, a couple weeks to bounce back and be ready to roll for Kai's surgery. We are on the wait list for the Ronald McDonald House, so hopefully that works out as well.
Thank you everyone for your kind words and encouragement. Along with your prayers, they mean a lot. We are so blessed!

Thursday, November 17, 2011

Claire + Pop=LOVE!! AND Darren's Blackberry

So I am a pretty laid back mom as most of you know. I let my kids get dirty, figure they'll put shoes on when their feet get cold, things like that (ok, I'm not THAT bad...I do make sure they have shoes on when the snow is over a few inches...). BUT there is one thing that I feel very strongly about-my kids DO NOT NEED POP!!!!! They are thrilled with chocolate milk and juice boxes for a treat, so we'll just stick with that. I do have to say though, it's probably easy because for the most part my kids don't like pop, so they don't ask for it-my feelings might be different if the situation were different, so if your kiddos like pop, that's your biz and it don't bother me a bit (enough gangsta's been a REALLY long day folks, bear with me).
Ok, back to the story at hand. I have been fighting a stomach bug the last week so I have had a bottle of 7-up in the fridge. The exception to my no-pop rule is when the kids are sick. I usually let them have ginger ale to encourage drinking and such. I have let Claire have a little when she said her tummy was hurting. She was actually wanting milk, but I didn't really want to take a chance, so I gave her some pop much to her SHEER delight. My little Claire Bear LOVES her some pop! I don't let her have it mind you, but Grandma does and sometimes she sneaks a drink of Daddy's when Mommy isn't looking. So tonight at supper I asked the kids what they wanted to drink-meaning milk or water like I do every other night, and it doesn't take a genius what Missy Moo decided she wanted to drink...POP! I gave her "the look" and told her no, her choice was milk or water. She kind of sighed and made her choice. Supper continued with all family members calmly sitting perfectly in their chairs, using perfect table manners, and having a calm and lovely conversation....SIGH...or not. It was the usual supper chaos, but that's my life! :) All of a sudden, Claire must have swallowed her milk wrong or something and starting coughing like you do when it "goes down the wrong tube". I asked her if she was ok, and she looked at my, as earnestly and honestly as you can image, eyes huge with sincerity, and said "MOM! SEE??? THAT is why I needed POP!" I looked at Sam, who was struggling not to laugh, and just couldn't contain myself. Oh Claire B-you make me smile. :)
So awhile back, Sam's company switched cell phone providers so he got a new, upgraded phone. That, of course, made his Blackberry of no use to us, so we gave it to the kids to play with. Every so often, it surfaces from the murky depths of various toyboxes. Yesterday happened to be one of those times. My son took upon himself to carry "his phone" in his pocket all day. Now, we happened to have a VERY busy day today. We had to be to the ENTs office at 8:50, and dear friends, I try to not have to be ANYWHERE before 10, so this was a stretch for us, but we made it! Then it was groceries, lunch and wal-mart, a quick stop to drop off a few things to my mom, and finally home with 3 exhausted kids and 1 exhausted Mommy at 3:00. Alright, enough whining-back to the story.
So, anyhoo, my son has his Blackberry is his pocket all day. 1st stop-ENTs office: Darren whips out his phone and asks Claire what kind of music she wanted to listen to. Now you have to remember, he gets to play with Daddy's REAL phone on occasion and that one is FANCY SCHMANCY with games, music, cameras, flashlights, you name it. So he asks Claire is she wants to listen to some music and can she hear the princess song playing? She looked at him like he had grown an extra head and when back to her book. Not wavering at all he looked at me and said "how about you Mommy? What kind of music do you want to listen to?" I told him I felt like a little "I am a Promise" which is a song on a CD that he got for his birthday that I LOVE listening to him sing along with. Not missing a beat, he said "Ok!" and starting pushing buttons on his phone. He then turned around so his back was to me and started humming the song, pretending it was coming out of his phone...HAHA! I love imagination!
We then moved on to Fareway. The newest thing there is these little mini kid-sized shopping carts that they can push etc. I figured why not? and let each kid have one. They actually didn't do too bad with them, and the back of my heel only got rammed about 468 times, but who's counting right? Anyway, I so wish I would have had a video camera. I was in the canned veggies aisle checking out prices and look over at Darren. He is leaning kind of on one hip, proped up against the cart handle "talking" on his phone! I quickly looked away, but kept one eye on him to see what he was doing. He talked for a bit and then ended with "Ok, I'll call ya later. Bye" and pushed some button on his phone, stuck it back in his pocket and went on with his day, just very nonchalant like he talks on a cell phone all biggie! I just about lost it trying not to laugh. Then a bit later "oh shoot, someone's callin' me, I better get this" and out of the pocket comes the phone and up to his ear for another short convo that involved a lot of "yeps" and "oks" and ended with "ok, see ya" and back in his pocket. The best was yet to come tho! We continued on and I was aparently taking too long looking at something or another and I look over and he is standing, kind of just a chilaxed pose, flipping his finger on the screen part of the blackberry like he was just browsing some apps. I chuckled but just went on my way, (Darren having stuck his phone back in the pocket) but there was something vaguely familiar about it that I just couldn't put my finger on. Fast forward to about 5ish. Sam is home from work, I am (still) working on putting away groceries, and we are just chatting and catching up, etc. Sam leans up against the dishwasher, crosses one ankle over the other, pulls his phone from his pocket....standing, kind of just a chilaxed pose, flipping his finger on the screen part of his phone.....Holy smokes I just about died laughing. Darren had looked EXACTLY...EXACTLY my dear readers, like Sam. He even put the phone BACK INTO HIS POCKET THE EXACT SAME WAY!!!! THAT was the reason it looked so familiar-my hubby does it EVERY DAY!!! HAHAHA!!!!! Oh man. I know all parents probably feels this way, but seriously my kids are so stinkin' funny they CRACK me up everyday!

Wednesday, November 16, 2011

So proud of my kids...

I'm sorry-I'm just so proud of my kids, so I have to share how wonderful they are. I won't be offended if you stop reading.........

Ok, you kept reading, so here it goes :)

Tuesday Claire had to get tubes in her ears. She did FANTASTIC and was so brave throughout the whole thing. I was so proud of her being such a big girl. She has recovered great and was back to normal within a few hours! There was quite a bit of thick fluid in her ears so the doctor gave me some antibiotic drops to put in her ears for a few days. I'm sure it feels REALLY wierd, so obviously she is not so fond of me doing it to her. When I had to do Darren's when he had surgery, it was all out battle to get his drops in! When I say battle I mean battle-I had to almost lay on him to get him to hold still to put them in! Needless to say, I was not looking forward to doing it for Claire Bear!
So last night before bed, I got the drops out and readied myself for battle. However, I needn't have worried! Claire started to cry and protest when I said it was time for drops, and immediately her big sister and brother were there. Long story short, this is how we now to drops for Claire bear-she lays on the floor between my legs. Inevitably, she starts to whimper. One sibling or the other (usually Darren) says something to the effect of "remember ClaireB, it's just a tickle-it won't hurt-I PROMISE!" and SHE BELIEVES HIM! Ellie holds her hands and Darren rubs her back, and talks to her ("It's ok ClaireB, it's ok, almost done") while I do one ear. Then we all count to ten while I have to do a wierd thing to basically pump the medicine into her ear. Then she flips her head and Darren and Ellie switch roles. Darren holds her hands while Ellie rubs her back and talks to her. We count to ten again and then she's up. Both kids heap praise on her, telling her that she did such a great job,etc. This morning, Darren even gave her one of his stickers! This is all without ANY prompting from me! She wants so bad to be big like they are, so them telling her that she's doing a great job means so much more than if Mom just says it! I never have to call them-they just hear it's time for drops and spring into action! I'm so proud of them I could just burst! It's moments like this that I think maybe, just maybe they do listen when I tell them to be nice to each other! I guess in my mind, I LOVE it that they feel like it's their duty to help and protect their little sister. Moments like this seem to make it all worth it. It's just a little moment like that that keeps me going. Granted, they are all sleeping right now, and it's past my bedtime, so I'm allowed to feel sappy. If they were all awake and running around like hooligans, I might not feel the same.... :) Just kidding-they really are pretty cool kids.
Darren told me the other day that he thinks that since Kai is the cutest baby ever, we should put him in a baby show. Those were his exact words. It just struck me as hillarious-I know what he meant, but in my mind a baby show is like a dog show, except with babies...think about how funny that would be....ok, like I said, it's past my bedtime.
Got some good news today! They called from Iowa City and we have an appointment with Dr. Meneses on Nov 30th-2 weeks from today. I am so relieved to finally have an appointment, but at the same time, it kind of brought back all those nervous feelings that had kind of lessened while we waited! We just keep praying for patience!

Monday, November 14, 2011

Not much to report...

Several people have asked recently, so thought I would do a quick update on here! We STILL have not heard from the pediatric neurosurgeon as to when Kai's appointment will be. I was driving myself crazy thinking about it and wanting to call the clinic every day until they gave me an appointment, but then I had a change of heart. The reason that we haven't heard is that Dr. Meneses' wife had to have surgery. He had to take several weeks off to care for her and then could only do his clinic times when his daughter could be with his wife. I finally realized that I needed to cool it because his family NEEDS to come before his job. He NEEDS to make his wife a priority over me and my baby. That was not an easy conclusion to come to, let me tell you that :) but I told myself that that means he must be a good guy if he takes good care of his wife right? :) I did call last Friday to see if they had heard anything and the very nice lady on the other end of the line told me that they have everything crosssed that they can possibly cross that he will let them know this week. She was very kind and assured me that it understandable that we would be getting anxious. They are so nice at that hospital. I have only met 2 people-1 doctor and 1 nurse that I wasn't overly fond of, but when you think of how many people we have dealt with throughout this whole ordeal, I think that's pretty great odds.
Meanwhile Little Man is growing with leaps and bounds. He is crawling all over the place and is starting to get brave enough to crawl out of the living room (mostly when he is trying to find me :)) on his own. He gets frustrated that he can't crawl as well on the kitchen floor since it isn't carpet but it's kind of funny, so we just let him go. He loves people-especially his siblings, even though they think it's fun to wrestle with him now. The kid eats like a trooper, and is a solid little bugger but when we went to the doctor for a well baby check, he was around the 50th percentile for both height and weight, although his head measured in the 97%! Big head, big brain right! :)
And speaking of siblings, I have to share a funny story with you:
So Claire has a My First Dollhouse, which she LOVES to play with. We had it down in the living room the other day and her and Darren were playing with it. Darren was of course the daddy, and Claire was the Mommy. Daddy, when he wasn't fixing things by banging his head like a hammer on them, seemed to spend a crazy amount of time on the toilet and hiding from Mommy (you know they say kids mimic what they see, so I had to check with Superdad to see if he was indeed hiding from me when he wasn't in the bathroom) while the Mommy was taking VERY good care of the baby and rearraging her kitchen table and chairs about 500 times (THAT Claire must get from her Aunt Heather b/c my kitchen table and chairs are in the same place they were when we moved here!). But anyhoo, back to the story. I was in the kitchen, listening, but not letting them see me and this is a paraphrase of what I overheard:
D: I'm going up on the roof Mommy!
C: Don't go up there Daddy! That's dangerous!
D: It's ok! I'm just going to go parachuting! Do you want to parachute too?
C: Oh Yeah, ok! That would be fun!
D: Bring the baby too! We could take her parachuting for her birthday!
C: Oh yeah! That would be fun! Ok Daddy, here we come!
...and so on! I got a smile out of that one! But remind me when Kai's birthday comes around, let's not let Darren and Claire plan his present....
Now that it's WAY past my bedtime, I need to head to bed. It was a crazy busy weekend around here. Friday, I did 13 (that's NOT a typo friends...13...I REALLY needed to get caught up...'nough said) loads of laundry, made a wal-mart list for the hubby of all the last minute party supplies, got stuff picked up and organized so that when Sam got home we all worked together and cleaned. Joe and Heather came to watch the Iowa game on Saturday, so they were here a little early which was super fun, and then the big party Saturday night for Ellie girl's birthday. That = late bedtime for super tired kids from all the excitement and fun. This morning up bright and early for meeting, then lunch at the hall and a baptism. Helped clean up, got home about 3:45, quick changed and took Ellie to dance. Dike Rec does a dance class for 6 weeks and some girls from the UNI dance team teach the little girls a routine. Today was their final class and then a "performance" for the parents, so my poor little kiddos got about a 40 minute nap before we had to be ready to go watch El. Then home for a quick "supper snack" as my kids say, changed again and headed to Gospel Meeting! Kiddos and hubby to bed means some much needed quiet time for Mom! I will probably need a nap tomorrow but that's ok-it's worth it for the few minutes of peace and quiet now! :)
So that's a quick (ok, so it turned into a not-so-quick) wrap up of the happening of our family. I will keep you posted on the status of the appointment for Kai. Thank you all for you concern and prayers. We appreciate them all!

Wednesday, November 2, 2011

Thankful Challenge!!!

Saw this on Facebook, so decided this would be a wonderful thing to do, especially at this time in my life! I'm starting a day behind, so today you get TWO days! :) Don't you feel lucky! :) So here we go!!
I'm taking the Now & Forever challenge: During this month of November I challenge you to say something you are thankful for everyday!
Day 1: I am thankful for the awesome man that God has brought into my life. He is truly my best friend. I appreciate his steadyness when I feel like I am about to go crazy. He is wonderful at thinking logically instead of emotionally, which I will admit drives me CRAZY at times, but more often than not, I find myself drawn to it when I can't think straight. He is always willing to help me (ok, not while Hawkeye football is on TV, but we'll give the guy a break!). He is an wonderful dad and I love it that my kids adore him. He makes rockstar pancakes and is the official Saturday morning breakfast maker of our house! :) I think we truly do balance each other. I know he has his faults, unlike perfect me :) but I know that every day I am blessed to have him be my partner in life. I love you Babe!
Day 2: I am thankful for my smiley little man. He had brought so much joy into our home. His big brother and sisters think that he hung the moon, and we all go to ridiculous lengths to get him to laugh. He just started to take a bath in the "big tub" and LOVES to splash and would stay in there all night if Mommy would let him! :) He is so happy, even when he has to get IVs, dilations, surgery, etc that he makes me happy. Even his little baby drools and slobbery grins makes me happy. I am so sorry that he has to go through all that he does, but at the same time, thankful because I truly believe that by going thru this trial with him, Sam and I have learned more about the love of God and how to depend on Him in all things. So Little Man-I love you and every day I am thankful for you!