Tuesday, November 20, 2012

Today Let Me Appreciate

So if you saw my post on FB last night, you will know it wasn't my brightest day. It was Sam's birthday and I wanted it to be a perfect relaxing night. I was going to have the kids showered, the house cleaned up, supper ready to go, and a cake-frosted and decorated by the kids- for dessert when he walked in the door. Instead, what actually transpired was about as polar opposite of the above scenario as possible. I was just starting supper, no cake at all-let alone one frosted and decorated, the house was a WRECK and the kids were whiny and fighting. Laundry was piled up, everything was a disaster, and so was I. Sorry honey-Happy Birthday to you! :( Sam wasn't the least bit fazed and just went on as normal, but I love birthdays and wanted to make his special, even if it really wasn't that big of a deal to him. He does so much for us and in my head, this was how I was going to show him how much I appreciate all he does and what a great dad he is.
AND to top it all off, Kai was being an absolute BEAST all day yesterday. He was whining, biting or crying pretty much all day. When he wasn't doing one of those things, he was hanging on my legs and fussing. We were ready for lunch and the kids had turned off the tv, but Kai wanted it on apparently. He climbed on the tv stand and tried to turn it back on (which he can totally do...*SIGH*). Darren tried to get him off the stand to bring him in for lunch, but Kai was hanging on the top of the tv and pulled it over, off the stand, onto the floor and crash-our tv is shot. The screen is broken and completely unwatchable. Oh my word.....I wanted to run out of the house screaming. Seriously. I really did. The kids knew they were in so much trouble and all 3 of them just looked at me with HUGE eyes. I didn't freak out-I just told them to go sit down and eat their lunch and tried to take lots of deep breaths in the meantime.
I wanted to bawl. We have been doing really good about trying to stay in our budget, even though it's squeaking. We have been doing good, but it's Christmas! I know my kids don't need a single things and it's about memories, but I LOVE LOVE LOVE Christmas and watching how happy they are when Santa brings them the perfect gift. My commission checks from Initials have been paying for Christmas so far, and that helps us to stay on budget in other places, and everything seemed to be going good, and then BAM! (literally....) this happens. I know that TV is definitely NOT a priority and not even a need, but my mornings seem to go so much smoother when Kai has his juice and his blanky and watches "go go go" in the little chair while I am getting the other kids ready. This morning? Not so smooth :) but we managed and everyone made it to school at their appropriate times. :)
Ok, so now you know how my day went. I am not whining (ok, I was, but not anymore-I'm just telling you now) but seriously...it was a STRESSFUL day. This morning, not so much better-crabby fussy teething monster. Finally decided that we were going to go pick up Arby's for lunch, got D to school, put Kai down for a much needed nap, got Claire situated playing quietly, and sat down to chill for a bit. I was looking thru Facebook and saw this blog post at "Hands Free Mama". I literally cried as I was reading it. I know for sure that this was one of those times when God let me see exactly what I needed to at the exactly the right time.  I shared the link to the blog post and the poem "Today Let Me Appreciate". It's so very true and so often I lose sight of it.

This is the part where the tears really started to flow:
Today let me appreciate the gifts in the mundane, ordinary moments that are graciously given to me. Because even though it’s far from perfect … and sometimes it’s messy and hard … this is my life.
And for this anything-but-small miracle that is my life … I am thankful.

Maybe you are having a tough day too or maybe not. Maybe we all just need a good reminder to be thankful for all the little things that add up to really big things.
So for now, I am going to go snuggle with my kids, rock with my grouchy baby, keep the motrin coming and be ok with frozen pizza for dinner and be thankful for all the little things. Thanks Lord, I needed that~

Thursday, November 8, 2012

November Thankfulness Day 8:

Day 8: Today I am so thankful that my kids do not get out of school every day at 12:20. They did today and they were driving me crazy fighting non stop about completely ridiculous things and changing their clothes 6 million times and running around outside in their swimming suits and Darren was punching people and Ellie was bawling about everything and their fighting woke Kai up from his nap and THEN Claire wet her pants....dear friends. *sigh*
Oh right...we are being THANKFUL, not whining....right.

Day 8: Today I am so Thankful for my wonderful neighbors! Our home is surrounded by wonderful people. They help me run my kids to school if I need them too, they let us sit with them at the top of the bleachers right on the 50 yard line for one of the biggest football games of the season AND share their really warm blanket with us AND buy us popcorn, they invite my kids over when their grandkids visit or send the grandkids to play in our yard since we seem to have a gazillion toys. They (ok I mostly call Sharon but I know the other would too if I called them) willingly send over whatever ingredients I seem to be missing for what I am making which happens way too frequently. They bring us over food after surgery and keep up on Kai and Claire and their medical issues. They turn on their porch lights on Halloween even tho they hardly get any other kids.
I know that there are lots of eyes on my kiddos-watching them play, etc. That might bother some people, but not me. I love it.  I love that my kids can make people happy just by going about their little people business. I love the protection that is there and how they watch out for my kids. I love it when the neighbors call me to tell me that my little daughter just locked her big brother in the trunk of her daddy's car and then left (true story...that really happened-so much for that mom of the year award!) I love waving as we drive past, chats by the mailbox or backyard or street or wherever we happen to be. I love the feeling of belonging here. Thanks neighbors! We love you! :)

PS Reason 6 million why we love our neighbors: When "Santa" finds a really great gift at a really great price, he can store it in Sharon's garage where little eyes don't find it!

Wednesday, November 7, 2012

November Thankful Days 1-7

So, as usual, I am late with joining the whole Thankful Challenge thing for November, but decided to do all 7 days on here! I think I will do all of my days on here so I have them to look back on thru the year and be thankful all year long!

Day 1: I am so Thankful that I know The One who holds my future and that all of my sins are covered by His blood! Not sure how I would have made it thru this last year without my faith that there is a plan and His plan is always better than mine.

Day 2: I am so Thankful EVERY. SINGLE. DAY. that I get to be married to my very best friend and there is no one I would rather go thru life's struggles and the daily grind with than Sam. He is an amazing father, and is the calm and logic to my crazy. We balance each other and while there are times that it definitely drives me absolutely insane, I rely on his calmness and logical thinking so much. I tend to be an emotional thinker and he is a logical thinker, so it works. Its amazing to me that God, before time began, created us for each other and where I am weak he is strong, and where he struggles, I have strengths. I see it every day and it's just another reminder of the amazing love of our Creator.

Day 3: I am so Thankful for my Ellie Girl. I think of all my kids she is the most like me, and because of that, there are times that we butt heads, but every day she makes me smile. She is my little performer and wants to be a cheerleader like her mom. She loves all things girly and is trying to grow up a little too fast for mommy's heart. She is an AMAZING big sister and the bond between her and Kai is very evident. She is very responsible and helpful (when she wants to be!) and I rely on her a lot to help with the littler kids. She is a smart little cookie and has been reading to her siblings lately. It absolutely MELTS my heart to see them all crowded around her on the couch listening intently while she read them a book or to see her and Kai snuggled in a chair and see her pointing at pictures in his books and him responding. Her and Claire have a new thing that they think is secret where after I put them to bed Claire snuggles over by Ellie and El will read her a book. They think they are so sneaky but what they don't realize is that Mom is the one that put that nightlight there in the first place! :)

Day 4: I am so Thankful for my Dude. He is SO very protective of his siblings and I truly believe he would fight to the death for any one of them. He can push the girls buttons like no other, but the second he hears about someone else messing with them or hurting their feelings, he is ready to battle! He is having to learn to play by himself now that little sis is in preschool too, so that's a work in progress, but he is trying! :) He loves to be Moms helper and is my garbage-taker-outer and laundry-hauler-downer. The kid can eat like you would not believe, and I'm not sure how we are going to keep food in the house when he is a teenager if he eats like this now! He's still skinny as a rail, and I'm not sure where all the food goes-I think he has a hollow leg. He is ALL boy and loves teaching his little brother how to play "ball" and play with tractors.

Day 5: I am so Thankful for my Claire Bear. Oh my...how does one descibe Claire? She makes me smile every.single.day with her thoughts on life. She is ADAMANT that she is NOT little, she is BIG! She is very go with the flow and can play with anyone and everyone. She is amazing at playing by herself when the other kids are at school and LOVE LOVE LOVES her kitchen. She will play with it for hours. She loves to help me cook and things like that and has decided that emptying the silverware drawer is her job. She teaches me patience and how to view life thru the eyes of a 3-ALMOST 4 Mom!-year old. She goes to school 3 days a week and absolutely LOVES it. Loves her teachers, loves the kitchen at school, loves the projects, loves that she is learning to write her name like big kids-just LOVES it! I am thankful that she does and hope she never loses that love for learning.

Day 6: I am so Thankful for my Mr. Man! At the current moment, he is having a very whiny morning, but hey, we all have those at times, even when we are 32! :) Through all of the medical issues this year, I have learned so much about patience and learning to wait on the Lord. Of course, I would so much rather that he DIDN'T have the issues that he has, but I KNOW that I have learned faith like I never would have had he not had the issues he does and for that I am thinkful. I love his happy smile, his obvious adoration of his big brother and sisters, how he gives squeezy hugs and slobbery, smacky kisses. I love how he loves things that roar (dinosaurs, lions, tigers, sheep :)) and making all the animal noises. I love how I know exactly what he wants and how I know his language-it's definitely ones of the perks of motherhood! :) I love morning-after-bath sleepy snuggles and how he smells SO good.  I love how he runs and is in a hurry to get everywhere. He definitely has his brother's facination with all things sports and his newest word is "kick" and he'll kick anything he can find that even remotely resembles a ball. He would live outside and has learned to yell "DADDY" and run to Sam when he gets home from work and squeeze his legs. I love watching him wave out the big window in the living room at random people driving by. I am just so thankful that he makes our family complete! :)

Day 7: I am so Thankful for my home. It is incredibly small for 6 people, that's for sure, and I would LOVE to have something bigger, but this home is ours and we are doing it with no help from anyone. I love how we have made changes to make it ours. I love how Sam and I can dream about the somedays that will hopefully come and our plans for the future.But it's more than that. More than just the physical house, I love our home. My hope is that people can come over and just chill and relax. I hope my home is a welcoming place. I love our location and our neighbors and the fact that they watch out for my kiddos. I love our little garden and the sandbox and the swingset and watching my kids learn to ride their bikes on the street. I am thankful that we have someplace warm in the winter and cool in the summer, a place of haven and retreat from the crazy world around us. And I really love my attached garage in the winter....:)

Saturday, September 29, 2012

Dear Marcia~

Dear Marcia~
I know that you will never read this, but it's good therapy for my sad heart so I am doing it anyway. Today was a day that I never expected to come this soon. The day that wasn't supposed to happen for at least 20-30 more years. Today was your funeral. You would have loved it. Your flowers on the casket were absolutely gorgeous and the arrangements all around were numerous. The hall was full and so many people there to honor your life and legacy.
You would have been SO proud of your 3 men. They were sitting in the front row and from my view a few rows behind them, I could see a sight that would bring tears to your eyes-I know it did mine. Rhett and Scott were on either side of Ray, and the sight of all 3 sets of broad shoulders sitting there straight and tall, looking right ahead...they just looked so handsome Marcia, and I know you would have been proud.
Your grandkids all looked so nice-the boys in their suits, the girls all dressed up so nice and their hair all beautiful. You would have really been proud of them today too Marcia.
Ray was trying so hard last night and today, but I could tell he was just so overwhelmed. Nothing like seeing a tough Marine with tears in his eyes to rip out your heart strings.  The love he had for you Marcia was always so evident and yesterday and today were no exception. We know Ray isn't a hugger, and that poor guy got hugged so many times, but hopefully it helped his heart to see others missing you too. I swear everytime I look at him I cry~him without you just doesn't seem right. And Scott??? You should have see Scott...Mr Obstinate-Because-I-Can-Be was hugging! See the effect you have on people? Scott was HUGGING! One for the record books that's for sure! :) Claire was giving out 'huggies' because "God made me a good hugger, right Mommy?" but she wouldn't give Rhett one-he teases her...imagine that, right?
Pretty sure I cried more yesterday and today than I have in the last 6 months. I just can't believe you are really gone. It was just too fast, and my mind just can't fathom that the next time I go to Stout, or we have a family picnic you won't be there by Ray's side, laughing your distinct laugh and telling us that we need more vitamin something or other and that we need to stop doing this and that because it leads to such and such. I felt like I did get to say goodbye on Monday, but I didn't really. I didn't get to talk to you one more time and tell you how much you really meant to me and how much I am really going to miss you. I didn't get to ask you what Ray's favorite foods are or what kind of cookies he likes and how you made them so I can make them for him someday when he's really missing you. We didn't get to finish talking about all your ancestry work that you were doing for our family. We just didn't get to finish Marcia...I wasn't done with you yet!
But on the other hand, knowing you are where you are, I can't wish you back here. After reading Heaven Is For Real, sometimes I think about what Heaven must be like, and the beauty that is there-beauty beyond our wildest imaginations. But you don't have to imagine. You are THERE-you have seen Jesus and talked with Him and are walking on the streets of gold. I think about how beautiful some of the places on Earth are and how Heaven's beauty FAR surpasses anything we have seen here on Earth, and how you are experiencing that beauty and glorifying in His presence at THIS very moment and I can't wish you were back here.
I will miss you Marcia-so very much. I love you and I will "see you later"~

Friday, September 28, 2012

My Little Flower Girl :)

So, I've said it on here before, I LOVE that my girls are "girly". Claire is to an extent, but not like Ellie. Ellie is ALL about all things girly (which, I am coming to learn VERY quickly includes WAAAAYYYY too much drama for this mama, but we're surviving). Hair, lip gloss, sparkles, glitter, shoes, purses, clothes-she loves it all.
Using the aforementioned knowledge, imagine for a moment if you will, the sheer exuberance in my eldest when several months ago, my cousin Dustin and his fiancee Erica asked her to be the flower girl in their wedding. Oh my word...excited doesn't even BEGIN to describe it. She hung a calendar above her side of the girls' bed for the sole purpose of having someplace to write "weding flwr grl" or something along those lines (hey that was months ago-she can totally spell that now-go Ellie! :)). I had a gazillion times of being asked how many times I had to flip the calendar page before it was September, and then once it WAS September, "How many more days NOW Mom?". Like I said....EXCITED!
The big day is almost here. Tonight was the rehearsal and she could literally not even stand still for a second. She was trying so hard to be grown up but before we got started she was just kind of bouncing, twirling, strutting around she was so excited. We had to go get a new outfit for the rehearsal because I swear she grew a foot over the summer and all her fall dresses look like miniskirts. She was DEFINITELY on board with the whole "new outfit" idea, and was so pumped to have a "Mommy and Ellie" date. I have to admit, I love having some one on one time with the kids too. It just seems like things are so crazy the majority of the time and Ellie especially gets depended on a LOT to help with Kai and things like that, so some special one on one time with mom is pretty great.
This morning was the funeral for my Aunt Marcia. It was a wonderful funeral and such a great tribute to a really wonderful aunt. I am going to miss her SO much and I know her family will too-please keep them in your prayers. (This is connected to this flower girl story, I promise). So if you are keeping track, this is how my last several days have been-funeral visitation on Thursday night, funeral friday morning, wedding rehearsal friday night, wedding prep sat am (hair, pictures, all that fun stuff!! :)) wedding saturday afternoon, to Garnavillo Saturday night AFTER the wedding, meeting Sunday morning, Bday party for Mia and Owen Sunday afternoon. Plans for Monday: Rock in my chair ALL MORNING LONG (HA I wish....).
ANYHOO...the point of me telling you all this is to tell you how awesome my MIL is. She heard about my aunt's funeral and switched her work days around so she could have today off and came down and stayed with the 2 boy yahoos while the girl yahoos were in school today. She picked up Claire from school at 11 and headed with the 3 little yahoos to Garnavillo so I didn't have to try and deal with them while at the funeral and wedding. Jean, you are a LIFESAVER and I appreciate so much what you do for my family.
WHICH leads back to the Ellie story....So not only does Ellie get to be the flower girl tomorrow she has 2 whole days of being an only child! She is diggin' this let me tell ya! Sam and I walked up to the school this afternoon and picked her up. We then walked to Kwik Star where she got a BIG box of Dots and didn't have to share them with anybody. She did mention, however, that she missed Kai because she would give him all the colors of Dots that she didn't like and he would eat them. HA! We then walked home and she didn't have to share conversation time with anyone AND got Mommy AND Daddy all to herself. She then snuggled into Daddy's lap (again, NOT having to share space) to watch cartoons for a while. But wait, the joy isn't over yet! We got to ride in Grandpa and Grandma's car to the rehearsal, so she got Grandpa AND Grandma AND Mommy AND Daddy all to herself! AAANNNDDDD Eric was at the rehearsal so she even got ERIC all to herself! Pretty sure she's never going to want her siblings to come home!! :)
If I'm being honest here, (which I am all about on this blog! :)) I have to admit, I am LOVING it too. It's so fun. We painted her toenails, did her hair, she "helped" me pick out my clothes and told me my shoes didn't really match my outfit but she guessed they would do, she picked out a perfume to wear, we put some glitter spray in her hair, she put some all over the rest of herself (she was VERY sparkly tonight!!), and even got to wear lipgloss out of Mommy's makeup bag. Tomorrow we are going to get our hair done, and maybe even lunch out with Daddy. Then I get to see her all dolled up in a absolutely gorgeous dress, a crown in her hair, and little high heels on her feet. Erica and Dustin gave her a "diamond" bracelet, so she will be decked out from top to bottom. She's just growing up way too fast, and sometimes I just don't get the time to enjoy the special qualities that she does have because we are in a constant battle over which clothes to wear or why something isn't fair. So often I find myself expecting so much out of her and I need times like this to remind myself how cool of a kid she really is, and that she is only 6 and that even 6 year olds that try to be so grown up are really only 6 and need some quality Mommy and Daddy time.
So, to my Ellie Girl-I'm so proud of you. I can't wait to spend a whole day doing girly things together and then watching you all fancied up, trying so hard to be be so grown up, but radiating the nervous excitement that all 6 year old flower girls should. My heart can't help but think forward to not too many years when my little girl will again be wearing a beautiful dress, a crown in her hair and a diamond on her left hand instead of on a plastic bracelet on your wrist. I love you so much chica-try not to grow up TOO fast ok? And please...don't spill on your dress tomorrow and try to stand still up there and not fidget too much? :)
And to Dustin and Erica-thank you so much for letting my little girl be a part of your special day. We love you guys and we wish you all the best in your new life together. And Erica....don't spill on your dress tomorrow and try not to fidget too much up there ok? :)

Friday, September 14, 2012

To My Big 5 Year Old on Your Birthday~

To my son who seems to be just growing up way to fast:
Today you are 5 years old. 5...that just seems so...I don't know...old. Even though you haven't been a baby for a long time, you are completely not a toddler any more-you are a boy. That makes my mommy heart just a little sad. But at the same time, I love this stage of your life. You have mastered riding your bike with no training wheels, and love playing "tag football" (flag football) with Daddy. You had your first taste of organized sports this summer playing t-ball and absolutely loved it. I have to admit, when I go to football games, I get excited for the day when I am cheering for YOU and watching you do what you love.
This morning you were so excited when you woke up that you couldn't even eat the chocolate donuts that you picked out for breakfast. You pretended to be annoyed when I put a candle in it and sang Happy Birthday really loud but I knew you weren't. :) Daddy is coming home early from work and you can hardly stand to wait and ask me about 8 thousand times when he is coming home.
Tonight is the big "Magic" birthday party. You wanted Chicken Pot Pie for dinner, but that seems a little crazy in my little kitchen to serve that to 30 people. Guess it's just pizza and chips-both of which make you very happy. You are pretty go with the flow-just like you have been for most of your life. You definitely were an easy baby!
You are definitely not perfect. I put on your preschool form that you are scared of losing at ANYTHING and anything that closely resembles chores. We sometimes call you Captain LazyPants, but guess that is an area of "future strength" that we need to work on. :)
You are such a great brother. You are EXTREMELY protective of your siblings-something that makes my mommy heart really happy! :) You told Ellie this summer that when you walked home from school with her, you would protect her from the boys that were teasing her. I know that you would do just that-and do it with everything in your little skinny being. When people pretend that they are going to steal Kai, you can play along for a little while, but if it goes on a little too long, all of a sudden you get this look in your eyes and a very fierce protectiveness takes over. You try so hard not to cry, but it's all you can do to hold it in while you are doing what you can to protect him. I hope that never changes. I hope that you ALWAYS fight for your siblings and do whatever you can to protect them.
I need to get everything going to get ready for the big party tonight, but watching you this morning my heart just feels so full-full of sadness that you really and truly are no longer a baby, full of joy at the little boy that you are and full of hope for the man that you will become. Keep watching your Daddy, Buddy and keep wanting to be like him and do what he does. He's a wonderful example.
This morning you told me that since you are 5 today, you can ride your scooter really good, pump yourself on the swing and that your racecar jammies are too small. Yesterday they were fine, but today they are too small since you are 5. You make me smile. :)

Happy Birthday to my "dude"-so glad that even though you are a tough, football lovin', scooter ridin', car crashin', all things remotely girly avoider and completely all boy, you still love to give your mommy your "super duper huggies". Don't grow up too fast~

Sunday, August 19, 2012

Summertime Crazy!

Holy Shamoley! Summer has absolutely FLOWN by! I realize that I haven't blogged in FOREVER! Sorry about that, my lovely followers!
Kids are back in school now, but we're still getting into the routine. Ellie is in 1st grade and is loving school and being back. She has made some new friends, but we are still working on Miss Picky Pants eating those school lunches.
Darren and Claire are both in preschool-Darren in Pre-K, and Claire in 3 year old. Darren goes Mon, Tues, Wed and Thurs afternoons and Claire goes Tue and Friday mornings! I see a lot of running in my future this year! :) Actually it's not too bad. Darren will get to walk home with Ellie, something they are both VERY excited about. Our preschool here doesn't go full out the first couple weeks-the kids just go for an hour and then they gradually increase it. Kind of a pain and Claire was not so impressed that she didn't get to paint her first day of school, but being that we LOVE LOVE LOVE this preschool and the teachers, this is a minor detail.
Kai...well, he's just Kai! :) He is such a spunky little turkey. The kid is a daredevil and scares the livin' daylights out of me about 100 times a day. He loves the slide, any slide, anywhere, and does NOT want help going down. This has led to some bangs and bruises, but he's a tough kid and seems to just shake it off and keep going. He has really started to give hugs now-quite possibly the most adorable thing ever. He will wrap his chubby little arms around you and make that noise you make when you give someone a tight hug. Sometimes, he just makes the noise and pretends to give hugs and then he thinks he's hillarious. Speaking of hillarious, at some point I need to get a video of him and Darren saying "OUCH". Darren (or anyone for that matter) will bang his head on the wall or couch or whatever and say "ouch!" and Kai just dies laughing. The other day I stepped on something and said ouch and he just about fell out of his chair he was laughing so hard. Not quite sure why that is funny, but it's just so cute when he laughs that you can't help but smile.
So, it is now REALLY late and I really need to go to bed. One of these days, I am going to sit down and do about 500 blog posts to get y'all caught up on our life, but for the meantime, this was your brief synapsis! :) G'Night! :)

Saturday, May 12, 2012

Lunchtime Convos: Life in the Desert

Not quite sure what to say since this isn't about any kids medical issues! :) Just kidding of course, but it DOES seem like that's what my posts revolve around these days! However, this one is a funny from my favorite oldest son and it went a little something like this:

We were eating lunch today and somehow (I rarely know how we end up talking about what we do...) we got talking about living in a desert. Ellie piped up that there was no water in the desert which lead to "do people in the desert live in houses?" "do their houses have water and bathrooms in them?" and other random questions like that. One of the kids remembered that Aunt Lois (their great aunt-she's, honestly, one of the absolute MOST wonderful people I know) lives close to the desert (she lives in Arizona) and they were all  SO excited that they actually KNEW someone that lives in the desert!!! Nevermind that she actually DOESN'T live IN the desert, but they didn't care. The best, however, was Darren's question. "Mom? Does Aunt Lois just take her camel or does she have a car too?" HAHAHAHA! I seriously laughed so hard. I assured him that she pretty much took her car or walked where she needed to go. I think he was a little disappointed that she didn't have a camel. :) Oh my, they sure do make me smile.

Wednesday, April 25, 2012

Oh my..It's Been CRAZY Lately!

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! :)

Friday, March 30, 2012

It's (Kind of) Good News! :)

The alarm went off bright and early this am...so early in fact, it wasn't even bright at all! 4:20 we rolled out of bed and got going for the day in Des Moines for Claire's EEG. One of the instructions that we had received was that it was VERY important for us to sleep deprive her last night and today. They want them to sleep for the test since it's so important for them to hold still. So, Little Miss Thang thought she was SOO cool last night that she got to stay up late! :) Big Sister was NOT happy about that one in the least, and Claire was LOVING it! Little stinker! :) Basically, we had to keep her up 2 hrs past her bedtime last night and then wake her up 2 hours before her normal wake up time this morning.  We had to be at the hospital at 7, so we got her up a little before 5, so we could be on the road and going by 5. She did great and was very much looking forward to her "Mommy and Daddy and Claire Day"! Grandma Harbaugh brought her a bottle of Root Beer to drink on the way there and oh my did she think that was pretty awesome too! Mommy doesn't allow much pop-she's the only one of my kids that likes it at all-and ESPECIALLY not for breakfast, so that was a REALLY special treat. Root beer and cake donut with chocolate frosting and sprinkles...breakfast of champions, I tell ya! :) Oh well, she was happy and that's what was important today.
Got to the hospital right on time, and actually had to wait a bit, but we did fine. I could tell she was a little apprehensive about the EEG wires, etc, but she laid on the bed like such a big girl, watching cartoons like it was an everyday occurance that someone was drawing on her head, and then "putting stickers all over my head, so I look silly Mommy!". She was a champ-I couldn't believe it. She didn't fuss or anything-she really did great.  I was proud of her. After she was all wired up, the wound her head in gauze to keep things in place.  That kind of made my stomach drop when I saw her-she looked like she had a major head wound or something! But then, she looked at me and grinned and "yep...still my little Claire Bear!" :) The tech told us we could lay on the bed by her, and she said she wanted her daddy, so Sam climbed up on the skinny little bed and laid by her.  They looked so cute. The lady said the test would take 65 minutes and that they needed her to go to sleep b/c they had to have at least 15 minutes where she didn't move. She turned off the lights and turned on a white noise machine and she left the room.  She had pointed a little video camera at her and told Sam to just raise his hand if we needed anything. I could see Claire was kind of struggling a little-very tired but not really feeling comfortable enough to settle down to sleep. I was sitting in a rocking chair watching her, watching those little lines on the computer screen, seeing her sweet little head wrapped in gauze as she sucked her thumb and "scratched" her blanky, wishing like everything that she didn't have to do this-wishing that there was some way that I could take her place, because I would-in a heartbeat. I just closed my eyes and prayed "Lord, I know this has to be so confusing for her. Please Lord, please, just let her fall asleep.  It would make this so much easier and we could know that we have an accurate test if she would just fall asleep and sleep peacefully. Please Lord." I opened my eyes, and would you believe, she was sound asleep, resting very comfortably-not even sucking her thumb she was so sound asleep. "Thank you Lord. Amen." I was SO tired in that dark room, white noise going, kid and hubby sleeping, that I grabbed an extra sheet out of the little closet thing, spread it on the floor, grabbed Sam's jacket so it wasn't so cold, and took a little nap myself! Pretty sure I made it thru the day because of that little nap.
When the test was over, they had to do a strobe light test since sometimes that can trigger them. Claire was awake but pretty sleepy, so she just kept her eyes closed for that part and she did great. Then we were done! Time to take all the gauze and "stickers" off. She winced a little when the lady was taking all the tape and stuff off her hair-which HAD to hurt, but she never cried! I couldn't believe it! Actually, yes I can. She is one tough girl! Not much, pain-wise, makes her cry. She's a tough little cookie that's for sure. The tech told her she could pick out a sticker, so we found a princess one and a snowman one that she liked. I thought that was good, but she was kept looking thru them, so I asked what she was looking for and she said that she wanted to find another princess one for Ellie, so the tech LOADED her up with stickers for her and her siblings. No joke, I bet she had 15 stickers-but she was pumped. :) She gave them to them too! It was cute-she was so excited to get home and show Ellie her "bracelet" (her ID band) and give the kids their stickers.  I love it when they share and be nice to each other! :)
After the test, we had a little while before the appointment with Dr. Narawong, the neurologist, so we just kind of wandered. We walked around, went to the gift shop and bought 10 little Tootsie Rolls since they were only 2 cents each, walked a little more, and happened upon a patient library! That's our kind of place, man! :) Daddy grabbed a magazine and a comfy chair, and Claire "read" some books to me-her newest favorite thing to do. We did some puzzles, played with some blocks, read some more, played with Legos, and by that time, it was time to go!
By the time we got to the Neurology clinic, I knew she was getting tired.  She insisted that she needed about 85 thousand drinks from the drinking fountain, and had to go potty constantly. She was LOVING having Mommy and Daddy all to herself! :) She was starting to get a little wound up, but luckily the exam rooms were really big, so we played a Memory game on the Kindle and everytime she got a match she had to run to the door and back. Then we played the Freeze Dance song for her to show Daddy her mad dancing skills :), and another game of Memory/Run Some Laps!  Dr. Narawong had to look at her EEG before she could see us, so that's why it took a bit.  Plus, when you're 3 and COMPLETELY out of schedule/very tired/center of attention/cooped up all morning, attention spans are quite short, so none of my ideas lasted more than a few minutes, but we managed just fine.
I really liked Dr. Narawong. She initially said that Claire's EEG looked good. Then she asked us a bunch of questions, examined Claire and said she wanted to go have another look at the test. When she came back, she said that she HAD found a small abnormality. I have no idea what that means. If you don't know (as I didn't before all this happened), an EEG records brain waves or something like that. No pictures of the brain or anything like that-just wavy lines. Anyway, she didn't seem too wound up about it, but did say that she wanted Claire to have an MRI just to make sure. Thankfully, she did say that we could have that done her in Waterloo, so that will make life MUCH easier not having to drive there again. She basically said that it could have been an idiopathic seziure, meaning they don't know why they happen! She said that Claire has about a 60% chance of having another one-up just a bit from the normal 50-50 chance because of the slight abnormality. She might be a little more prone to them with high fevers, etc also. But, she's not on meds, she looks great, and we don't need to go back unless we think we need to. She did call a perscription in for us for a drug that could stop a seizure that won't stop on it's own. She said that a short seizure like Claire had, while very scary, doesn't really do harm to the brain.  However, sometimes a seizure won't just taper off like Claire's did, and if they last 30 minutes or so (HOLY SMOKES...30 MINUTES!!! I would be FREAKING OUT!!! Anyhoo...) they can cause brain damage. So basically, if she has a seizure that doesn't end in 3 minutes or less, we can give this to her to stop the seizure. Definitely will be glad to have that around.  Hopefully I never have to use it, but it will be nice to have just in case.  She also said that in cases like Claire's, even if she does have more seizures, she will likely just grow out of it. That was a relief to me, because I would HATE for her to have to deal with this her entire life. We just have to watch her, no swimming without direct supervision since she could have one and drown, things like that. She also told us what to do if Claire would have another, so I feel a little more prepared and I know that I would be a little calmer too.
Now we just wait for the MRI to get scheduled and go from there. I'm not freaking out like I was with Kai, and didn't even get a major migraine. I have a dull headache, but that could be from lack of sleep, etc too. It was nice actually. We were home by 4ish, and just spent the evening relaxing and playing with the kids.  Ellie and Darren are playing t-ball this summer, so we played a little baseball and got out Kai's bubble mower that we got him for his birthday and gave to him a little early! :) He didn't get to play with it much, but his big sister sure had a blast with it! :) Frozen pizza for supper, and an early bedtime for everyone.  My poor husband has been working late this week every night, so he was SHOT! He was in bed, asleep by 8:00, along with both my boys. The girls were pretty happy to read books in bed and play with all the junk that's piled on their bed, but it's pretty quiet in there now, so everyone is sleeping. As a momma, that's a pretty good feeling. Even though it's been a crazy busy and stressful day, its ended well. My babies are happy, content, warm, and sleeping. My hubby is getting some much needed rest.  My house is clean-thank you SOOO much Mom and Rachel!!!!!! Even the laundry is at a manageable level. :) As I sit here (rocking of course!), I just feel content. And I know why. There are lots of people praying for us today, and I KNOW that's why I have to peace that I have. It's not to say that I don't worry about Claire because I do, very much. However, I know that we have such a wonderful WONDERFUL support system around us-not just the family and friends that always just step up without question when we need them, but the prayers that are ascending on our behalf. We are so thankful for all of them-for all of YOU!
And now, this tired Momma is going to do what the rest of the clan is doing...get some much needed rest! After I rock just a LITTLE more of course...... :)

LOL! Just had to add this-One of the instructions Dr. Narawong gave us was that she should wear a bike helmet. After she left, Claire looked at me and said "Does that mean I have to wear a helmet when I ride my trike down the front steps Mom?" Heavenly days...that GIRL! In case you don't know-the other day she about gave me a heart failure when she rode her trike down the steps in front of our house. All I heard was a scream and see her laying on the sidewalk.  She was fine, but SERIOUSLY! I told her that there would be no more riding any bikes down any steps-Mommy's heart can't handle that! She just looked at me, grinned her big Claire Bear grin that makes her eyes almost sparkle and said "Ok, Mommy!" Turkey! She makes me laugh. :)

Wednesday, March 21, 2012

Answer to Prayers!!!

Again, I am in tears...this time in sheer relief.  Just got a call from Blank Children's Hospital in Des Moines.  The lady that called said "I know you live kind of far away, but could you be here next Friday at 7AM?" I believe my response was something along the line of "I can be there at 5 AM if I need to be!". I honestly cannot believe it.  I KNOW that it's only the power of prayer that we got our appt this fast. It's such a relief to know that we can get some answers soon and that I don't have to wait until October.  Thank you all so much for your prayers-please keep it up!

Update on My Little Claire Bear!

Why do I always feel like the only thing I post on here is updates on my kids health? Mercy sakes!
For those of you that don't know, I will start from the top!
Yesterday (Monday) Darren had a dr appt in the morning at 9 so we took El to school and the other 3 kids and I headed out for a day of shopping and running errands.  We came home about the time Ellie was done with school, so picked her up and then realized that I had to replace the light bulb in my kitchen, but it would have been too easy had it just been a regular light bulb!  SO we headed to Home Depot  and a couple other places and grabbed some Applebees for supper.  Sam was in Dallas TX for work, so we just decided to bring supper home and eat it there and have a "family movie night" as my kids love to call it. We had gotten off the interstate and were heading into Dike when Claire made a really wierd sound in the backseat. I actually commented something along the line of "knock it off, Claire-that noise freaks me out!" I looked in the rearview mirror and immediately yanked the car off the road. I jumped out and opened her door. She was twitching all over, her head was thrashing around, her eyes were rolling around in her head, and she was just making these really really wierd noises.  Her lips started turning blue and then her face. I thought she was choking, so I tried to pry her mouth open, but her teeth were absolutely clamped shut.  I honestly thought she was going to die. Do you know how terrifyingly scary it is to think your child is going to die and there isn't a thing you can do but watch it happen? I remember turning around and in a voice that I didn't even recognize as my own, scream "SOMEONE HELP ME!!!" I was trying to call 911 but it was like my fingers couldn't even move to unlock my phone. My friend Zach lives in the house that I happened to be close to and he heard me scream and came running out to help.  Zach, for some really wierd reason, I noticed that you didn't have any shoes on, so I owe you some new socks! :) By that time, I was on the phone with 911.  While I was (attempting to) talk to the dispatcher, another vehicle pulled over, and a lady wearing scrubs jumped out of the car and asked what was going on.  I remember telling her that Claire wasn't breathing and she went to work, rubbing her chest and talking to her.  She losened her buckles since Claire was still in her carseat. She tried to get me to tell her Claire's name and I couldn't even talk. She asked Darren what his little sister's name was and I remember his eyes being absolutely huge and he looked right at her and said "Her name is ClaireB". It makes me cry to even type that.  He was so brave.  By this time, I was absolutely hysterical-honestly and truly hysterical.  Ellie was sobbing in the backseat and I couldn't even talk to her to calm her down. Looking back, it's almost embarrassing. I know I am far from the only one, but you never think that in that situation that you are going to completely fall apart, especially in front of all the other kids. I know that was just as, if not more, scary than what was happening with Claire-seeing your mommy fall completely apart and be hysterical is enough to freak out any kid!
By this time, there were all sorts of first responders showing up.  You would think that since they are all volunteers it would take a bit, but not at all-it was AMAZING how fast they showed up! I will forever be grateful, from the very bottom of  my heart, to all of those people, many of whom I don't even know, for dropping what they were doing at a moments notice and rushing to help my little girl. They loaded my baby girl in the ambulance and one of the EMTs told me that she was driving me to the hospital. I called my friend Kelli, who lives in Dike, to see if she could take my other kids.  I will never forget her response "I can't Tiff-I'm sick and I don't want to make your kids sick.  Tyler (her husband) can you go over to be with Tiff's kids?" I could hear him say "Sure. Why?"  That, my friends, is what true friendship is all about.  He agreed w/o even knowing why. We weren't to my house for 2 seconds when he pulled up and took the other kids into the house.  I think I gave him some instructions for Kai, but not sure if they made any sense or not. When I lifted Darren out of the car to send him in the house, my poor little boy looked at me and just started sobbing with his head in my middle.  That was the first time he cried, and it absolutely ripped my heart out.  I told him that he could play Wii with Tyler and that seemed to cheer him up, so I am glad I was able to at least do that for him.
We got to the hospital right after the ambulance, and I will never forget running into the ER.  I saw them lift her out of the ambulance and she was crying.  Her favorite Hawkeye shirt was in tatters from when they had to cut it en route to the hospital.  I actually had the foresight, thankfully, to send her blanky along with her, so I was glad she had that.
My poor hubby was in Texas at the time, and it was awful storms there.  He went to the airport to see about getting a flight home, but it was not to be. Turns out that all the flights after 6pm were canceled due to the storms so there was no way he could get home. We just kept texting and talking on the phone, and it all worked out ok.
Long story short, we went to the ER, they did a blood test and a urine test and it all came back fine, so they said we could go home!  By this time, Claire had covered her bare tummy with all the stickers that she had been given, and was thinking that she was pretty cool since she got to have some pop!  We don't do a lot of pop at our house, and esp for the kids, so that was a REAL treat.  Someone commented to me that if she would have asked for a pony at that point, I probably would have given it to her and it's absolutely true! The doctor just said to call our family doctor in the morning and go from there.  I went home thinking that was the end of it. Of course that would be too easy. Our doctor called last night and told Sam that she is referring Claire to a pediatric neurologist since she had absolutely no symptoms prior to the seziure-no fevers, no sickness, nothing. I cried. I told Sam that I just don't want to do this again.  I don't want to do the headaches, the waiting, the stress...I don't want to do ANY of it again.  It's horrible-I am so paranoid now.  I hate having her out of my sight, afraid that she might have another seziure and I won't be around. I'm scared to let her go outside to ride her bike, afraid that she might have a seziure and fall off and hit her head on the cement. Yesterday in the car when we went to go get Sam at the airport, every time she made any noise at all, my heart lurched and no joke, I bet I checked her in my rearview mirror about every 5 seconds. I am NOT that type of person, so it drives me crazy, but I can't help it.
Talked to the referral person at our drs office this morning and she informed me that the wait for an appt in Iowa City was pretty long. She didn't know how long, so I called Iowa City myself and was informed that it was approximately October before we would get one and it would probably be several months before they would even let me know when our appt was. I called Des Moines, and theirs was August. Again, I cried.  Our only hope for an earlier appt would be if our dr would call directly to one of their drs.  I left a msg for her in hopes that she would do that, but we will see what happens.
Thank you to everyone for your kind comments of encouragement and all of the prayers.  We all appreciate them so much and please keep praying for my baby girl. Thanks~

Monday, February 27, 2012

How to Get a Girlfriend...4 Year Old Style

So the other day, I pick D up from preschool and ask him how his day was. Being his father's son, he replied "fine" and that was that! However, on this day my usual second question provided some interesting news! I asked him who he played with and he replied "my girlfriend".  Very nonchalant, like ya know...this happens every day. 
Me: So a girlfriend, huh?  Was this a friend that just happened to be a girl or a GIRLFRIEND?
D (continuing to be very matter of fact): a girlfriend
Me:hmmm, ok.  What is her name?
D: ummmm...I have no idea
And that was the end of that.  BUT he continues to insist that she is his girlfriend.  We finally found out her name when he pointed her out on the class picture. The best part tho, is figuring out how you get a girlfriend when you are 4.  I overheard this conversation yesterday (they didn't know I was listening)
Ellie: So that's your girlfriend huh?
Darren: Yep.  Know how I got a girlfriend Ellie?
E: How?
D: Well, we were at school and I asked her if she wanted to play with me.  She said yes, (little shrug of his shoulders) so now she's my girlfriend!
LOL! LOVE it!  So, Darren now has a girlfriend that he didn't know her name and I'm PRETTY sure that she doesn't have a clue...

I must add a note to this post however.  A couple weeks ago, my son developed a little crush on "his friend" as he calls her.  I asked him this morning who he liked better, his girlfriend or his friend.  Without hesitation, he got the biggest grin on his face and said "Mom, I like Tina best. Know why Mom? Cuz I like her and she likes me!" So Tina, you are still #1! :)

Monday, February 20, 2012

Kai Update :)

Just realized that the last post I had was the day we came home from the hospital, so I thought I would give everyone a quick update! :)
Kai is doing really good.  He was NOT a fan of having the wound dressing changed, nor was his mommy.  He would SCREAM and fight so hard that one of us would literally have to hold him down as the other would put the gauze and stuff on. Definitely not a highlight of my life.  We had to be super careful not to get stool on his incision for obvious reasons, but his incision started right above his crack so that proved to be a challenge as well.  They had given us some drapes to put on him, but they were hard to keep in place and seemed like they didn't do much.  Thankfully we did ok and got a good report when we went back for his 2 week wound check in Iowa City. His incision is pretty big compared to what I thought it would be.  My guess would be around 6+ inches starting at his crack and going up. It doesn't seem to be painful from what I can tell as we obviously lay him on his back to change him, etc.  The only real issue we are continuing to deal with is with bowels and bladder.  When we first got home, he would pee EVERYWHERE when we tried to change him-like everywhere....there was no controlling that little firehose!  I would just have a small washcloth right next to the changing table to cover him, otherwise it was quite the disaster.  That has very much improved (if I change quick, I don't need the washcloth anymore :)) but he still kind of "leaks".  Plus he seems to have no control at all over his bowels.  I realize that he is a baby and that is to be expected :) but this is different than that.  A normal 10 month old baby has a dirty diaper maybe several times a day at most.  Kai pretty much always has a small amount every diaper change.  It's not constipation. Hard to explain, but just suffice to say, it's not normal! :) Silver lining of the whole situation is that when you have no feeling around your little hole, horrible bloody diaper rash with terrible sores doesn't seem to bother you! It broke my heart.  I have never seen diaper rash like that poor kid had.  I don't know if it was all the drugs coming out or all the laxative stuff they had given him or just the constant dirty diapers but it was absolutely heart breaking.  More than likely it was a combo of everything.  Normally I would just pop him in the tub with some Dreft, slather on the A & D, and we'd be golden, but I couldn't do that because his incision couldn't get wet and he had to get his diaper changed so much that I honestly don't think the A & D had a chance to do anything! His bum still is sore, but at least its not a bloody mess anymore.  Called up my favorite doc, who just happens to be my big brother :) to get some advice.  Noah had terrible diaper rash like that when he was a baby and being Travis, he did some research :) and came up with his own concoction that seemed to work really good, so we are trying that too.
The first couple weeks at home were brutal to say the least.  Dr. Mike had told us that the sedation doesn't really put them into a good REM sleep, so Kai's sleep schedule was completely shot.  Imagine how you would feel if you really didn't get good sleep for 4-5 days and multiply it since he is a baby!  NOT a good situation.  He was just so overtired that he didn't know which way was up.  I think it was the second night we were home he SCREAMED until about 2:30 in the morning.  He was almost asleep, but just couldn't settle down.  Everytime I would get him asleep and lay him down he would INSTANTLY wake up and scream and scream and scream!  Frustrating to say the least! We had to do some "cry it out" finally, which I ABSOLUTELY HATE doing, but that was the only way he would get any decent sleep! It took a while, but I think we are finally, within the last week or so, getting back to normal.
Ellie, Darren, and Claire....well they were a whole 'nother story!  Oh my goodness-naughty doesn't even begin to describe them.  I knew they would be naughty for a while since they had to be so good the whole time we were gone, but DUDE!  I was NOT expecting that!  The whining,  the back-talking, the fighting....there was more than one day Mommy just about went postal!!! :) Let's just say there were lots of early bedtimes all around for a while!  It was almost like they were testing to see if all the same rules still applied as when they left. LOL I said more than once that it was a good thing they are all so cute! :)
Our other downfall of the whole situation was that we are officially done with nursing now.  Kai was kind of starting to self-wean a little before surgery, but would still nurse a couple times a day and before bed.  After surgery, he couldn't have table food or baby food, only milk.  My body wasn't used to be being the sole source of nutrition for a very hungry little boy, so we gave him some formula which turned into all formula!  I wasn't really too upset being that he was almost 10 months at that time.  My goal was 6 months, and being that I wasn't able to nurse more than a few weeks, if at all, with my other kiddos, I was pretty proud of myself for making it as far as I did. The problem arose when my stubborn little stinker decided that the ONLY thing he would drink was the premade (EXPENSIVE) stuff they give you in the hospital.  He wouldn't drink powdered formula or pumped milk.  We tried different kinds of bottles, sippy cups, you name it we tried it.  We finally had to get him the expensive premade stuff, which KILLED me as I had tons of pumped milk for free in the freezer!  We had finally graduated to the liquid concentrate which is slight bit cheaper (but not much), when someone told me to mix up the powdered formula and put it in the fridge overnight before feeding it to him.  BINGO! I now mix up a big batch, stick it in the fridge, pour in a bottle when I need it and we are good to go!  I have been mixing in my milk too so we are using that up as well as stretching the formula a little further. I do have my moments when I really can't believe I am done nursing and find myself missing it. It seems kind of wierd at times, but i do enjoy having my body back and not having to find a private place to nurse since I was never comfortable enough to do it in public.
Now that I've given you all the gory details :) I will tell you that honestly Kai is doing absolutely wonderful.  As I am typing this, he is standing on the arm of Ellie's little chair trying to yank the curtain off the wall so he can see out the window. :) He isn't walking yet, but he's very close!  He cruises along stuff and I think he could stand if he could get up the courage.  He is a crawling, jumping, dancing machine! His favorite thing continues to be wrestling with his big brother and sisters and he has a smile that literally lights up his whole face when he sees them. He loves picking on Claire and I have to smile at how well she just tolerates him.  I know that will change someday, but for now they are hillarious. He LOVES splashing in the water in the humidifier (which he knows is no-no) and has seriously amazing crawling speed when he hears the basement door open.  He has been loving being outside with the big kids too!
We head back to Iowa City on March 16th to meet with Dr. Menezes and we have an appt with a Peds GI doctor too, so hopefully will get some answers.  They had told us that there would be issues since they have to manipulate the nerves when they detether, but my mommy heart sometimes has a hard time being patient!
Thank you all for your continued prayers and support.  They mean so much to our family!

Tuesday, January 31, 2012

We are HOME!!!

SIGH!  I am sitting at home on my own couch, in my pjs, typing this and I cannot explain how good that feels! Getting ready to head to bed, but thought I would just get everyone up to speed on the last day.
Shortly after I blogged last night, we started to see some action on the BM front. I had convinced myself that we were headed for some major intervention and I think we would have been had he not started going.  I know that they had called some pediatric GI doctors, so I think the nurses were getting a little more worried than they were letting on.  So, we started changing diapers and trying to get him settled for bed but the IV line kept beeping and saying that it was kinked. Turns out that Kai had basically yanked his IV out of his head.  My stomach dropped because it's no secret how much I HATE IVs.  My poor little man was so uncomfortable that I wasn't sure if my heart could handle having to put him through another iv placement.  Superdad to the Rescue!!! My awesome hubby volunteered to stay again at the hospital so I could get away before the iv placement started. I just can't bear the thought of Kai being in pain and having to hold him down while he is screaming is just more than my heart can handle. So, feeling so torn, I got the heck out of there.  I was pretty sure we were going to be there a few more days what with this new issue popping up, and Kai had pooped all over his blankys so I popped some laundry in and took a shower, all the while hoping to hear the phone ring and Sam telling me that the IV was in, Kai has emptied his tummy and they were both going to sleep. Finally about midnight, I sent Sam a text to get a status update and he said that they had tried a couple times, had someone from PICU come down and try, and no one had been successful so they were waiting for the flight nurse again, and that I should just go to sleep so that one of us wasn't exhausted in the morning.  I was so tired, so I finally agreed after he promised to call me if Kai needed me.
I woke up feeling MUCH better and texted him right away to see how his night had gone.  His response was "Night was horrible and we are going home"...wait a sec...oh no-my poor baby and YAY at the same time! Turns out my poor hubby got almost NO sleep last night.  He said that he would just get Kai to sleep and then he would poop and make a huge mess.  Needless to say, he would wake up during the changing of the sheets, blankets, diapers, drapes, etc.  That happened several times and then Sam FINALLY got Kai to sleep, no poop, and was crawling into bed when the nurse came in to do vitals...GRRR!  I can only imagine the frustration. He said the small amount of sleep he did get didn't come until at least 4:30. He said Kai slept for about 4 hours and then by that time, all the doctors were rounding, lab people were coming for blood draws, and that was the end of sleep!
Someone had brought breakfast to RMH today, so I ate some breakfast and made up a plate for Sam and headed up. Long story short, they apparently were happy with the "progress" Kai had made with the constipation and since he was standing up shaking his crib and acting like a wild man :), they said we could go home!  Sam said someone from the ped surgery clinic came down to take a look at Kai's bum because we thought it looked kind of wierd, but they said that everything looked fine.  We packed up some stuff and then Dr. Menezes' PA came to answer our final questions and sign our discharge order! We headed to RMH to get our stuff there packed up.  Hy-Vee had donated a bunch of stuff for lunch, so it worked out great.  You don't realize how delicious things like milk, fresh salad and fresh fruit are until you eat a lot of cafeteria and greasy food! We packed and did our cleaning at RMH, then Kai and I had some lunch while Sam loaded the car, joining us when he finished.  Kai and I hit up the playroom while Sam did all the checkout stuff and we were OFF for home!  We decided that Jean would keep D and C one more night so we could catch our breath a little and I was thinking that we would do the same with El, but after a conversation with my mom, I decided that I needed Ellie to come home and she needed to be here too :).  Sam crashed almost as soon as we got home and Kai and I just relaxed and enjoyed our rocking chair for a while. It was kind of cute.  He was crawling all over the place checking everything out, and I could tell he was looking for his big brother and sisters and was a little confused as to why it was so quiet in our house and why no one was manhandling him! :) I love it! I invited myself over to Mom's for spaghetti, so Kai and I left Sam at home sleeping and headed over to surprise El.  She was so happy to see us.  A few minutes later she had her face buried in my middle, and when she looked up, her big brown eyes were rimmed in red and I asked her if she was going to cry. That did it.  We sat on the floor of "her room" and she just cried.  She was such a big girl and so brave, and I knew she was just so tired that she needed to cry now that Mommy was home.  Not gonna lie...I choked back a few tears myself.  It was just so good to hold her in my arms, knowing that I wasn't going to have to watch her walk away in a little while.
There is nothing like some good home cooking from your mom's kitchen when you are tired, and it was delicious.  Ellie, of course, was NOT ready to go all of a sudden :) but when I mentioned seeing Daddy she changed her mind. Kai was so happy to have someone sitting next to him in the car.  I looked back in the rearview mirror on the way home and Kai was holding onto Ellie's finger.  Not doing anything-just holding it. Those 2 are good buddies and it's adorable in my unbiased opinion! :)
My house is a disaster, I have hardly unpacked anything, and today I am so ok with that.  2 of my babies are sleeping cozy and warm in their own beds, and 2 more will be here tomorrow so I can squeeze them. I can't wait!! I'm sure they will all be cranky and naughty since they have had to be good for so long, but maybe I will just hug it out of them! :)
On that note, I am going to snuggle on MY couch, with MY hubby, and watch MY tv and then go to sleep in MY bed only to wake up to shower in MY shower!! Can you tell I am glad to be home? :)

Monday, January 30, 2012

Monday Update

I wish you could see my little man now.  He really honestly looks like he is about 8 months pregnant.  It's funny but its not funny.  Poor little guy hasn't pooped since last Wednesday.  His little tummy is just so full it's pooching WAY out.  Even his innie belly button has turned into an outie. So far since last night, he has had 3 glycerine suppositories, 2 doses of milk of magnesia and 2 doses of Miralax and NOTHING has worked.  They just gave him an enema so we are just waiting for that to do it's thing and be prepared for the clean up!
He seems to be doing really good.  I think he was having some pain in his back where his incision is because of all the pressure in his tummy.  I think it really hurts to push so that's why he hasn't.  We are kind of in a catch 22 because he can't really rest because of his constipation and pain, but we can't really give him anything for the pain because that is what is causing the constipation! Right now he is crawling around in his bed and standing up holding on to the sides playing with Sam. It's proving to be kind of a challenge with all the iv and monitoring cords-he's yanked them out so many times (not the IV-that stays in thankfully) that I think they have kind of just given up until he's asleep. He's actually pretty wound up-I think it just feels so good to be up and playing.  He's not supposed to be up and shaking the sides of his crib like a wildman, but that is exactly what he is doing right now, so I'm guessing there will be more sedation coming his way soon. Hopefully this enema does its thing soon-I'm not sure what the next step will be if this doesn't work!
We had lots of company yesterday, so that was a nice distraction.  Trav and the boys came in the morning, then Eric and Ashley brought up some lunch for us and Joe and Heather came for the afternoon and hung out for a while which was nice. I stayed here at the hospital last night so Sam could get some good sleep at RMH.  Kai was really restless last night and seemed like everytime I just about fell asleep he woke up or they had to come mess with him for some reason and they he didn't want to sleep after they did!  *SIGH* He finally slept from about 3:30 to 6:30 and then Sam came around 9:30 and I went back to sleep for a while, so I am doing ok. Hoping for an early night tonight, but the only thing we know for sure is that we can be sure of nothing! :)

Saturday, January 28, 2012

Crazy Day 3!

Oh my it's been a crazy day! It's 10:00 and I am just turning on the computer if that tells you anything!  Texted Sam this morning and he didn't respond right away, so I just hopped in the shower to get ready, and wasn't out too long when his text back was something to the effect of "not a good night.  be prepared, there is an IV in his head". Needless to say, I pretty much rushed to the hospital after that!  Turns out that the foot where his iv was was starting to swell and the backup one in his hand kept kinking.  I guess they had a TERRIBLE time starting another one.  They would get them in fine and then his little viens kept blowing.  They finally decided to try in his head and eventually had to call in a flight nurse to get one in.  My poor little baby. In a way, I wished I was there to comfort him, but in all practicality, I am SO glad that I wasn't there.  I don't think I could've handled it to be honest.  Sam said that he was just SCREAMING and at one point he had to hold his back down while someone else held his head.  It makes my stomach hurt and makes me want to cry just thinking about it. The one in his head seems to be doing great and now he's wearing socks on his hands so he doesn't try and pull it out. Claire thought that was pretty wierd that he had socks on his hands!! :)
Got to see my kiddos today!  I have been missing them so much! George and Jean brought up Darren and Claire and a little later my folks brought up Ellie.  I think they were scared of Kai because they didn't want to touch him or get too close.  I know it's hard for them too, but they didn't do too bad. It was getting a little rambunctious in Kai's room, so Jean took over Kai duty and we took the kids to RMH to show them where we stay, etc.  It was so nice being able to be with them.  We took a tour, played in the playroom, ate some lunch, and then the kids and I played a game, did a puzzle, and snuggled on the couch to watch a movie while Daddy got in a much needed nap after his crazy night/morning. Ellie made a comment while we were there that "you guys get to have all the fun and do all the fun stuff" (like stay in the RMH).  Then we hung out in the ICU after D & C left and I asked her again if she still thought that Daddy and I got to do all the fun stuff since this is where we are ALL day long.  Her answer was a very quick no! :)  Claire cried when she had to leave me and Darren kept hugging me and telling me he loved me and that he wanted Baby Kai to come home.   He didn't cry but he looked so sad that i thought he would cry.  Needless to say, I cried.  Seeing Mommy cry made things so much worse, but I didn't want them to go either.  I hate being seperated from them this long and it was a rough day to begin with so that didn't help any either. We just keep reminding them, and they remind me when I get sad too, that we are all doing this, even if we don't like it, because we love Baby Kai and we want him to be healthy.
Today was a rough day for little man too.  Apparently the Dex stuff that has been working so well to keep him sedated is very addicting and if they use it too long, they have to cycle off of it gradually, so they didn't want to do that with Kai.  No one told me this until much later, and I was VERY frustrated that they wouldn't give it to him, but wanted him to stay on his tummy!  Do you know how hard it is to keep a VERY active little man on his tummy when he's not sedated much?  CRAZY hard and very exhausting let me tell ya! By around 8 my nerves were SHOT and I was about ready to scream at the next person who was wishy washy about why they wouldn't give it to him.  All they would say was that it was just for a little while and tomorrow he could move around more.  No one told me WHY they were stopping the Dex. One doctor even told me that I shouldn't worry because Kai wasn't really mad at me, he was just frustrated and he wouldn't remember this at all.  Honestly, at that point, I wanted to smack someone and yell "I KNOW he's not mad and I wouldn't care if he was.  I KNOW he won't remember this, nor would I want him to, but that has NOTHING to do with what I asked you!!!"  I didn't, but it was hard.  All I knew was that he couldn't go down to the regular peds unit until he was off the dex but they kept saying that maybe he would just go tomorrow.  So why won't you give him the dex for the night so we can all get some peace!  FINALLY, around 8:30 or so, Dr. Mike, a resident who we really like and who we think LIVES at the hospital :) came in to tell us that they were going to move Kai since he was off the dex and they were filling up in the PICU so they didn't want to have to move us at 3 AM if someone needed our space.  I asked him about the stupid dex and he FINALLY explained it to me.  If someone would have told me this morning when they turned it off that it is very addicting, and Kai was nearing the addiction stage, instead of being so wishy washy I would have a few less gray hairs, but what's done is done and I feel much better.  (Especailly since I just vented on here too! :))
So here we are on the regular peds floor.  We have a private room and it seem a lot bigger than the PICU room.  Kai doesn't have to be hooked up to so many monitors so that is nice too.  They don't have to check on him as often, so hopefully everyone will get some sleep. We still can't snuggle him, but he can at least lay prone on a pillow on my lap, so I did hold him for a while today.  I can't wait to snuggle and cuddle him tho! HOPEFULLY Dr. Menezes will say tomorrow that Kai can be a little more active because that would make our lives much simpler! One of the nurses told me last night that she thinks Dr. Menezes is the best surgeon in the hospital, but he is VERY strict with his patients.  Yep, we got that!
Off to the RMH for me.  Super Dad is staying the night again.  I even argued with him this time that it was my turn and I was completely fine staying so he could go to RMH, but he insisted he is fine, so I guess I will let him spoil me! :)  I am going to try to come a little earlier tomorrow so he can maybe go get a decent nap later on, so we'll see what the day holds. We have learned that you really never can tell, so we just go with the flow and try to be as positive as we can! Good night for now!

Friday, January 27, 2012

Day 2

Thank you everyone of your kind comments and encouragements.  They mean a lot!  Kai is doing good.  When they told us that he would be sedated, in my mind, that meant that he was totally asleep, but it's not.  He definitely sleeps a lot, but wakes up quite a bit too.  When he is awake he is quite the little bugger and it's definitely challenging to keep him on his tummy and not crawling around.  He is on some medicine that the nurses call  "dex" along with several pain medications, including morpine and tylonel and lots that I don't know too :) The dex is supposed to make him sleep/be drowsy.  This morning they tried to lower his dose....yeah-that didn't go so well. I now know, from experience, how hard it is to keep a very active 9 month old on his tummy or side when he really doesn't want to be! They actually had to put his dose back up so he would stay resting. He is hungry ALL the time.  Dr. Menezes said that he could nurse so I was so glad to do that today.  However, my body isn't used to being his only source of nutrition, so he has been having formula too.  The nurses are all amazed at how much he eats. :) That's a good sign right? :) Feeding him while he is laying on his tummy has it's own set of challenges, but we seem to be managing.  Diapering isn't going as bad as I thought it would.  They just put his diapers on backwards,and it makes things MUCH easier! :)
Sam and I seem to be managing pretty good.  We got into RMH last night, so that is wonderful.  Sam stayed here with Kai last night and I slept there.  I was SO tired that I knew if I didn't sleep, I would just make myself sick.  When I got back, I literally wiped my face with a baby wipe, went to the bathroom, took off my jeans and climbed into bed.  I didn't even change my shirt or anything.  I think I laid there maybe 2 minutes and was OUT!  I woke up a little after 7, went to the bathroom, crawled back into bed and slept until 9:30!  It was so nice, and I woke up feeling SO much better.  I got my shower taken and actually felt human enough to take on the day! My awesome hubby volunteered to sleep on the little couch here last night because he knew that I was shot. Wasn't that sweet of him?  I love that guy! AND he even volunteered to stay again tonight!! He headed a little while ago back to RMH to take a nap for a while and then will come back later. He said Kai had a pretty good night. Woke up a few times, but nothing too major. It's hard to tell if Kai is feeling pain.  He is kind of fussy and out of it from all the sedation, but they seem to be keeping up on the pain meds, so I think that is helping. We will be in the PICU again tonight, and depending on what Dr. Menezes says tomorrow, we might be heading down to the regular peds floor tomorrow, but I have learned in this hospital not to hold my breath.  It will happen when it happens and I am ok with that.
We have been getting excellent care.  The nurses are VERY caring and knowledgable, so that definitely helps make us more comfortable
Little Man seems to be finally sleeping peacefully, so I think the correct amount of Dex finally got into his system.  Before when he would sleep, he was still kind of restless but he seems to be pretty relaxed right now so that helps a Mommy's heart too. Last night he just couldn't settle down.  All he could have was pedialyte and was taking in so much the nurse said we shouldn't give him anymore.  I think he was so hungry and just wanted to be held, neither of which I could do!  It was so hard-my arms literally ached to hold him, but I knew I couldn't so I just stayed by his bed and stroaked his head and his back until he FINALLY settled down about 2 hours later.  Breaks a momma's heart ya know?
Other than that, not too much going on! We have had a couple visitors which is a nice distraction and I am finally getting some free reading in so there are definitely silver linings to this cloud! Sam has been watching all the movies that I am too scared to watch with him on the laptop with headphones.  He gets them from the patient library here, along with the games for the playstation that is in our room. I miss my kiddos like crazy, but Ellie and I keep reminding each other that we are doing this because we love Baby Kai! :)
Thanks again for all your prayers and encouragement.  I know I keep saying that, but they REALLY do mean a lot to us!

Thursday, January 26, 2012

Surgery is OVER!!! YAY!

As I write this, I am sitting in the oh-so-comfy hospital chairs :) in the PICU.  Surgery is done!  We were here at 6 this morning and everything went great.  Kai slept good all night, so I just bundled him up in blankets and snuggled him on the way to the hospital. Not a good idea, I know, but I just couldn't help it this morning.  Pre-surgery went fine.  The anesthesiologist that came to talk to us, Dr. Austin, was VERY nice.  He was playing with Kai a little while he talked to us, and when we were done talking, they were ready for Kai.  Dr. Austin held out his arms and Kai went to him with no problems, intent on trying to pull Dr. Austin's mask off to find his nose. :) His brother and sisters honk when he pokes their noses, so he thinks that everyone else should too! He wasn't crying or anything, so that made it a little easier on a Momma's heart to hand him off to strangers.  Of course, once he was out of the room, I cried a little.  When we got to the surgical waiting room, I sat down and then I REALLY cried.  Of course at that time, the "family representative" stopped to talk to us.  I know I am not the only person who has cried there, but STILL!  It's embarrassing, but life goes on.
There was a couple of very nice people that we talked to while we were waiting, so that is a nice distraction.  I was feeling very restless, so even though I had tons of stuff to do in my bag, I went for a little walk and found a rocking chair in the patient library.  Guess where I was when my mom found me later! :)  I know it's wierd, but it just felt so good to sit and rock.  Shortly after that, they called and said the surgery was done and they were starting to stitch him back up.  Total his surgery was just over 4 hours, so that wasn't terrible.  The people we were talking to were there for 8! Dr. Menezes said that everything went well.  The fat was as thick as Dr. Menezes fingernail-gross, but other than that, no surprises or anything.  They put internal stiches, but used glue on the outside so Mr. Kai won't even have to have stitches taken out! It took a while, but they finally called us to the ICU to see my baby! He is sedated, but occasionally awake.  He's very drowsy but that's ok.  They have to keep him on his side or his tummy for at least 48 hours.  I can't hold him which is really hard, but he seems to be pretty comfortable.  If I thought he was in pain or really uncomfortable it would be harder to not hold him, so we're managing. We will be in the ICU for a couple of days at least and then to the regular peds floor.  Our nurse in the ICU is awesome.  He seems very knowledgeable and compassionate, so that's comforting too.
Honestly, my brain is just tired right now.  If this doesn't make sense...sorry! :)  Sam just brought up my pillow, so I will take that as a sign that it's time for a nap! :) Please pray for my little man's recovery and that there are no complications so we can go HOME and have all this just be a memory. I will try to post updates on here periodically.

Wednesday, January 25, 2012

Our Day of A Million Appointments~

Thought we would just keep everyone in the loop of how our day went in light of the surgery tomorrow, so here it is!
Well, it's been a crazy day, but we are finally settled in our hotel for the night.  Baby Kai was a TROOPER all day long.  Seemed like we had to be about 6 million different places. The poor kid couldn't even get a nap for more than 20 mins or so, but he did great. 
First stop was at the Pediatric Specialty Clinic to make sure everything was ok with his bottom and the prior surgery there.  We saw a PA that we have worked with quite a bit in the past and she said everything looks GREAT and was very happy with how everything looked. There was no scar tissue so that was good news.  We grabbed a quick bite to eat, and next stop was the anesthesia dept to go over everything there with them.  Dr. Carter said that he had helped with Kai's first surgery and said he remembered because Kai had an unusual name! :) That all went as expected and we even had a little time, so I nursed Kai and tried to get him settled down for at least a LITTLE nap.  He was so overtired by that point, what with it being 2:00 and he hadn't really slept all day. I did finally get him to sleep and he slept in my arms until the next appointment with the Neurosurgery people.  They of course, have to tell us all the risks and possible complications before we sign the consent forms and it almost made me cry.  We have been told over and over by different medical staff that Dr. Menezes is the best of the best, and Molly (the PA from Ped Surg that we saw) even told us that people come from all over the world to see him, so that is comforting. Next stop was lab work and my tough little guy didn't even cry.  He just sat on Sam's lap and was so calm.  He did cry just a sec at the end, but I think it was because he wanted his arm back, not because they were hurting him. :) Next stop was the EMG dept.  Basically what they did there was hook up some things to him to test the nerves in his legs.  They said that it feels kind of like a static electricity shock.  He did fine for the first leg, other than being a little concerned, but by the time they did the second leg, my poor little baby was DONE.  He kind of looked around like 'why are all you people hurting me?' and then he cried.  He did cry hard then, but that is to be expected and I was so proud of how good he had done.  He was such a happy baby all day and we got lots of comments about how cute he is and what a good baby he was.  He was happily waving to anyone who would wave back and talking up a storm.
We did not get into the Ronald McDonald House unfortunately, but the guy there suggested a hotel and even called to make the arrangements for us.  RMH has a deal with several hotels so when they are full, patients and their families can get a discounted rate.  So we are in a Comfort Suites which is very nice.  Had some Texas Roadhouse for supper-yummy :) and now are just chillaxin' and playing with Little Man.
Kai is first surgery tomorrow morning, so we have to be at the hospital at 6 with surgery at 7:15. They told us it will probably take about 6 hours. We will probably just stay at the hospital with him in his room until we can get in at RMH, since he will be in ICU and their rooms are pretty good size and private.  They told us today that he will be sedated for a minimum of 2 days, possibly up to 4 depending on how everything goes and then I guess we go from there!
I have a super happy little boy playing peek a boo over the top of my computer and those little laughs are just too cute to resist, so I will log off for tonight!  We would value your prayers and thanks for all the kind words and encouragement.  They mean a lot!

Wednesday, January 18, 2012

Amazing Encouragment Just When I Needed It!

So I'm sure you could tell from my last post that hearing that surgery was pushed back was not my best day.  It was just so hard.  I don't WANT him to go to surgery, but I just want it to be over and not have to stress about it anymore. His MRI was in OCTOBER so it's been a LOOONNGG wait!
I was laughing to myself the other day because I caught myself being surprised at God stepping in and putting the encouragement I needed right in front of me.  When will I learn to stop being surprised?!? :) I was reading a book that I got for free on my Kindle called "Daughter of Joy" by Kathleen Morgan (VERY good book btw). As I was reading, there was a section toward the end that caught my attention.  So much so that I copied it in my journal so that I can re-read it whenever I need it.  In view of a couple different friends that need a little encouragement as well, I thought I would share this with you.

*taken from "Daughter of Joy" by Kathleen Morgan*
"God always has a reason Abby.  It's just so hard sometimes for us to accept it". She smiled sadly. "Fear gets in the way, doesn't it? Fear of the great unknown, fear that God will require something that we cannot, or don't WANT to do. But we CAN Abby.  God never asks anything of us that HE doesn't give us sufficient strength to do.  And He never, EVER asks it unless its for our greater good."

"I know all of those things Ella." She sighed. "I just don't feel them in my heart anymore."

"Live them anyway," her friend admonished, a fierce light burning in her eyes. "Faith isn't grounded on emotions.  It's grounded on the will. It's grounded in the act of taking up your cross and following the Lord wherever He leads, through good times and bad, through dark days and happy ones. "

"We're not tested and tempered in good times, Abby." Ella released her hand and sat back in her chair. "Our true test," she said softly, "lies in the dark night of our despair."

**Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5**

This has been such an encouragement to me and again, God gave me just what I needed when I needed it the most.  This isn't to say that I don't still stress about Kai's surgery and the details that need to be taken care of that go along with it, but it's no longer the intense frustration so I consider that improvement!
Things seem to be falling into place nicely for when we are gone.  There are a few details that I need to get ironed out, but they are minor ones.  I don't think Darren and Claire really realize what's going on.  They just know they get to hang out with Grandma for a few days, but Ellie is a different story.  While she is looking forward to staying at Grandma Harbaugh's and hopefully riding the bus there :) she tells me everyday that she wishes we didn't have to go and that she will miss us.  Her teacher is WONDERFUL and has suggested that we e-mail each other throughout the day, so I think that will be nice for both of us! :) We have been planning skype dates and other stuff like that, so I think she will be fine, but if you wouldn't mind praying for my brave little girl that would be much appreciated as well. We are planning a "Mommy and Ellie" date to Panera and picking up the next Laura Ingalls Wilder book since her and Daddy are almost done with the 2nd one so maybe a little one on one time and some encouraging is all that she needs.
Thanks again for all the prayers and hope this encourages you and brightens your day!

Wednesday, January 11, 2012

Change of Plans

Just thought I would I would let all my loyal followers know about our most recent change of plans.  Got a call today from the Neurosurgery clinic and they canceled Kai's surgery for next week.  They had a more urgent need and pushed him back until the following week.  I wanted to cry.  I am just so ready to stop thinking about this and stressing about it! Guess there isn't much I can do about it, so we will just go with the flow. Now all the arrangements need to be redone, etc, but I guess that's not insurmountable! So now we head up on Wednesday the 25th for his pre-op work up and they surgery on the 26th.  We appreciate your continued prayers!