Monday, December 15, 2014

Cecostomy Time!

Here we go again! Heading back to Iowa City for another surgery. This time Kai will be having surgery to place a cecostomy tube. They go into part of his bowel called the cecum (sp????) and connect it to the abdominal wall. He then will have a little tube put into his side that we will be able to put the enema solution in every day. This will make it so we don't have to do the whole process of putting the big catheter in his bum and all that jazz. It's quite the process and involves moving him and....well, lets just say it can and has gotten quite messy. I'll spare you the gory details (although, if you read thru some previous posts, the gory details are there! LOL!) It will make the whole process a whole lot easier and he will be able to help with the intention of doing it all by himself down the road a bit. He's really starting to want some independence in the bathroom and we are really trying to encourage it. He holds the catheter after I put it in, opens packages, throws things away, etc. The end of the cecostomy tube has a little square that will go on the outside of his body with a cover that we will be able to open, insert a special adapter, and put the saline and glycerin in via syringe. Should take a lot less prep, less supplies to order and haul when we travel, and be MUCH easier for Grandma's to handle when we have to (or get to :)) be away. The nurse practitioner we have been working said since this will clean out the entire colon instead of just the bottom part like his current enemas do, there should be a lot less chance of him leaking and we might even be able to space them out instead of having to do it every day. That will be awesome because an hour plus out of every night sometimes gets to be a little challenging. Plus, at least an hour of every night, the only toilet in the house is being used. That has presented some challenges as well! He's actually a little young for the procedure, but after talking to the surgeon and explaining that Kai already does awesome sitting for an hour+ every day and all the other things they look for maturity wise, he was all for it. Our NP was very helpful and gave his vote of confidence for Kai as well which was nice.
Tomorrow we head to Iowa City for all his pre-surgery consults and check ups. He also can have NOTHING TO EAT.....ALL. DAY. LONG. Not even breakfast. His surgery isn't until Wednesday, so basically nothing for a day and a half. He can have as much clear liquid as he wants, but absolutely nothing at all to eat. Oh my stars...I am DREADING tomorrow. I have been trying to pump it up as being so cool that he gets to have all the juice and pop he wants tomorrow, and we got popsicles, juice boxes, little bottles of water, and cool Jello sea animal molds. We have to pick up some meds and run a few other errands tomorrow, so hopefully he is distracted enough that we don't have too much trouble. We are staying in a hotel tomorrow night-with a POOL :) so he's excited about that too. He's not too keen on going to the hospital since the last time he went was when he had his kidney stone and that was none to fun to say the least! We are pretty honest with him since he's pretty quick to catch on to stuff, and that seems to help him. I told him that we would be with him as much as we possibly could and that seemed to help too. The IV will go in AFTER he's asleep with the mask, which makes Mommy's heart very relieved.
Prayers that everything will go well with the tube placement and then everything starts "working again" when the procedure is over would be much appreciated! Please pray for all of us tomorrow as we keep him from eating and that he does ok. Prayer for my mommy heart would be much appreciated as well!

Wednesday, November 12, 2014

Happy Birthday Ellie Girl!!

9 years ago today, my life changed forever. 9 years….seems like it's flown by but at the same time it seems like a million years ago. 9 years ago today, the dream that I'd had since I was a kid came to fruition. 9 years ago today my Ellie girl was born. 9 years ago today, I became a mommy. I will never forget the moment they put Ellie in my arms. It was a tough labor and she was born in the middle of the night, so I was beyond exhausted, but it didn't matter. They took her to the little thing to check her over immediately after she was born since delivery had been kind of tough for her and I both. The moment they placed her in my arms, though, none of that mattered. She was here and she was beautiful. The little one we had dreamed about and prayed so hard for. I remember saying "Hi little girl! I'm so glad to meet you!" as tears filled my eyes. Sam was leaning over the look at her too and I could tell he was just as anxious to hold her as I had been. When he took her, it was like he had been handling babies all his life. He just picked her up and ever so gently tucked her in the crook of his arm. I was kind of shocked-like how did you know how to do that? Proof that he was born to be a dad! :)
Fast forward 9 years. Today that beautiful, tiny little 6 pound baby is a beautiful,spunky 9 year old. She is exceptionally picky, and would rather starve than eat something she has in her head that she doesn't like. She was pretty pumped that she made peanut butter cookies pretty much by herself at Grandma Harbaugh's the other day. We have quite a few 'discussions' about clothing. She loves "fashion" but constantly wants to wear sweatpants because jeans give her "button rash". In case you have never heard of it, button rash is the little marks you get on your  sides and tummy when you are so skinny that you have to cinch your pants all the way in with those adjustable waist things. If you have never heard of it, that is totally normal because it is a completely made up disease, but according to my girls causes all sorts of TERRIBLE tragedies, pains and other maladies. It's kind of fun for me now-she can make suggestions about which shoes look best with this outfit and other fun girly stuff. She really wants to wear make up, but is content with "lipstick" (aka lip gloss) for now. I tell her she's just too cute for make up (not that I would let her wear it anyway, but you know what I mean) and it's not my fault. If she wasn't so cute, then maybe I would have to let her wear it to cover up her ugly, but since we don't have that problem, she can't wear make up! :)
She's not a huge fan of math but LOVES to read. It's fun for me to give her suggestions about books that I liked to read as a kid and experience the joy that a love of reading can give thru her eyes.
Kai man ADORES his big sister. The other day is a perfect example. Kai was being a BEAST. He really needed a nap, but hadn't gotten one and therefore, his little life was falling apart. Nothing was making him happy. Finally I asked El if she would read him a book. If I would have suggested it, he would have been ADAMENTLY against any sort of thing, but when she asked him, he was all for it! I took a picture of the 2 of them snuggled in the rocking chair reading. He loves all his siblings, but I think him and El will have a special bond. They have since Kai was a baby and it's cute to see it continuing on today.
So, today, my attention loving 9 year old is taking hello kitty cupcakes to school, and has requested Texas Roadhouse for supper so she can sit on the saddle and have them do the yee-haw thing for her. :) We are celebrating Saturday where the menu will be pizza, chips, and apples with peanut butter and chocolate chips, all her favorite things.
Happy Birthday Ellie girl. I know we are getting to that age where we don't always agree on everything, but I hope you know that no matter what, I've got your back. I know you don't always understand my reasonings but that's ok. I know you are trying to grow up so fast, but just can't quite get there. I know friends will hurt your feelings and someday a boy will crush your heart. No matter what, I will be here for you. You might not aways agree right now with what Daddy and I say or do for you, but even then, I hope you know that we love you more than you will ever know.  More than you will ever understand until that time when you have your own little one to hold. You are my first born, my long awaited, so VERY wanted, so very special baby girl. Happy Birthday Chica- thanks for making me a Mommy

Friday, October 24, 2014

Follow Up to the Kidney Stones

Just thought I would do a quick follow up to let everyone know that Kai is doing great. Tuesday he slept until about 8:30 Sam said and was pretty happy. They gave him a dose of morphine at 8:15 and then just waited to see if the pain would start to flair up as the morphine wore off. Thankfully it didn't. He never officially passed the stone that anyone could find, but being that his pain wore off, we were discharged. I was pretty nervous that we would get home and he would be in pain like that again. Experiencing that once in my lifetime is enough thank you very much! Thankfully everything was fine. I still need to call to Iowa City and see what they have to say. I know the pediatrician from Covenant had been in touch with them, but I never got to talk to her and I am interested to see what they think.

My older kids had ridden the bus to Thad and Liz's (Thanks Liz-you're a lifesaver! :)) until my mom got off work. She sent me this pic~

I love this…all lined up like little stair steps. They make me happy.

After we were officially discharged, Kai called Grandma to tell her that we were on our way home and she asked if we wanted to come for pancakes and sausage. Yep, I sure did! I don't know why, but when things are just seemingly overwhelming and crazy, my mom's food just tastes SO good. It's always good-she's a good cook but there is something about mom's cooking that is just so comforting. Thanks for supper Mom. :) 

The kids got to go for a ride in the back of Grandpa's pickup to go look for Lucky (Grandma and Grandpa's dog :)) since no one had seen him in a while. They drove around for a while with no luck only to find him in the machine shed where he had gotten in and couldn't get out. They thought it was hilarious. It was a good way to end a crazy couple of days. 

Then home with my CRANKY tired boy. He was pretty pale, and still kind of hoarse from screaming so much :( but just couldn't seem to settle. He was scared to go to sleep, even in our bed which is kind of unusual especially as tired as he was. Looking back, it was very possible he was playing us :) but at the same time I do wonder a bit if he was kind of scared to go to sleep because before when he was so tired he would drop off just for a second and then wake up screaming in pain. Either way, Daddy let him stay up to watch the World Series. It was cute. He was just snuggled in between us on the couch, asking Sam a million questions about baseball which Sam so patiently answered. When we went to bed, he was pretty sure that there was room for him right in the middle of me and Daddy in our bed, but Momma put the kibosh on that right away being that that little body is quite the mover at night and I desperately needed some sleep! :) I told him he could sleep on the floor beside me, so he did. When he woke up the next morning, he still didn't have much of an appetite, and was pretty snuggly which was completely ok with me. I didn't end up having to go to work that day so that worked out well. We wrapped up in a blanket in the rocker and watched cartoons. :) That afternoon, you would have never known there was anything wrong with him at all! Him and Claire were playing outside and he was completely normal. A little more thirsty than normal, but they say fluids are good with this sort of thing so we just kept his little cup he got from the hospital full of cold water and he was good! 

He's still doing antibiotics for the bladder infection and we have a follow up appointment this afternoon with our doctor, but other than that, he is good as gold! 

I still have to shake my head-my kids and their weird illnesses. My mom even asked around at work and people had never heard of a kid getting kidney stones. Like I said-we like to keep things from being too boring around our house I guess! I told someone the other day though. It's kind of like Claire's seizure. The first time was absolutely terrifying. After that, they are still incredibly scary, but I know what to look for, I know what to do, etc. I have done my research and familiarized myself with it a bit. All that being said, if he never has another one, that's fine too. :)

Again, a big thank you to everyone for all the prayers, texts, encouragement and love. Offers to help and Papa Murphy's pizza :). Short texts or messages letting us know you were praying. They all mean so incredibly much. Each time something crazy like this happens, you all step up EVERY. SINGLE. TIME. One time is incredible, but as many times as we've needed it??? Humbling. We will never be able to fully express our appreciation so I guess we'll just have to leave it at this. Thanks guys. We are so blessed that each of you are in our lives.

Tuesday, October 21, 2014

Heaven Forbid Life Gets Too Boring in our Household!!

Seriously, why do my kids never have normal illnesses? ***SIGH*** I'm going to rename this blog the Medical Craziness of Brandt Family or something like that. Guess I better start at the beginning.

Yesterday afternoon, I took Kai and my nephew Charlie out to ride in the combine and tractors with the awesome guys from DeGroote Farms. They were in little boy heaven to say the least. When the big kids got off the bus at Thad and Liz's, I took the little boys back to Liz to play for a bit while I took the older kids for their turn. We hadn't been going long when I got a call from Liz that Kai was complaining of severe stomach pain. I could hear him sobbing over the phone. I was pretty sure that he was just tired since it had been a pretty big day for him and we hadn't had supper or anything yet. But as soon as I could I went to go pick him up. He was sitting on Liz's lap just sobbing. Got the other yahoos and their stuff and we headed for home. Meanwhile he is literally thrashing around in pain. He was doubled over and just kept wailing "Mommy! My tummy hurts, my tummy hurts. My tummy just hurts so bad". Just before we got home, he threw up, which I assumed would help his tummy, but it didn't. Got home and called my resident dr (aka my Mom :)) and decided that we should take him in since he was still doubled over and wailing. Sam took Kai to Sartori while I stayed home to manage homework, showers, supper, etc. Thank goodness for texting. They did a bunch of tests- blood work, urine tests, x-rays and found out he had a bladder infection. He's had a bladder infection before and it wasn't as severe or as sudden of pain so I wasn't convinced that a uti was the cause. In the meantime, they had started him on morphine because his pain was so bad. They did an ultrasound and a ct scan, where they finally discovered that my poor sweet boy has a kidney stone. A kidney stone?!?!?! Seriously? I have never heard of a kid with a kidney stone. I'm sure it happens, but I have never heard of it. Why couldn't it just be a normal thing like an appendix or something like that? Guess we like to keep things from being too dull at the Brandt house.
I was just finally crawling into bed at around 11 when Sam called that they had found a stone and were transporting him via ambulance to Covenant. Of course I kind of freaked when I heard ambulance, but it was just because of the morphine. However, that was about the max my mommy heart could take, so I called my parents. Bless their hearts, they crawled out of their warm beds and came over to be with my other kiddos so I could head to the hospital. I brought some clothes and supper for Sam who hadn't eaten yet. Got there about 12:15 just as the ambulance was pulling up. Finally got up to the right floor and I could hear him crying. Other mommas know what I'm talking about-it was like mom radar right to the sound of that crying. The morphine had worn off on the ride, so he was in quite a bit of pain again. Poor kid was so exhausted that he kept trying to fall asleep but all of a sudden would just start thrashing around and screaming his tummy hurt. It was horrible to watch. I finally just crawled in bed with him and snuggled. I started humming "Amazing Grace" which is what I sing/hum when I rock them if they don't feel good or whatever. I kept humming and scratching his back and head and he seemed to settle for short periods of time, but would always wake up crying. FINALLY, they got all the t's crossed and i's dotted so they could give him his morphine and once that kicked in, he was out. That poor baby was absolutely exhausted. Once he settled, I headed for home since I was working this morning. I have been running the scale for DeGroote Farms during harvest. It's so fun-I love it. It's not like I'm unreplaceable by any means, but it's also not like there is an abundance of people just sitting on their haunches there waiting for something to do. Rick was very sweet this morning and told me to go, but Sam and I agreed last night that if Kai had a good night, we both didn't need to be there. We have been keeping in touch (SO thankful for cell phones!!!!) and I even talked to Kai for a bit this morning. He was drinking some juice watching cartoons and said he felt good. Sam said he doesn't seem to be in any pain, but they aren't sure if the stone has passed or if it's just the morphine doing it's thing. They were going to do a cath later this morning (because he can't pass urine on his own-that would be just too simple. We have to throw in curves like neurogenic bladders to keep life from being boring!!) and see what they could see. So now, it's a waiting game to determine the next step!
This momma is running on coffee and prayer this morning. My adrenaline was still going when I got home about 2:30 so I got my laundry sorted :). I think I finally crashed about 3:15-3:30. I slept until about 6:30 and then off and on until a little after 7, so it was a pretty short night. Soon as I'm done with work, I'm going to go snuggle in an oh-so-comfortable hospital bed and nap with my baby in my arms! I know he's not a baby, but I tell my kids even when they are 100 they will still be my babies!! :)
SOOOO in the seemingly never ending saga of medical craziness, we would again appreciate your prayers. Please pray that Sam and I make the right choices for him and for my sweet little boy that all this passes quick and his pain stays under control. We appreciate them so much!

Thursday, October 16, 2014

Saying Good-Bye To Granny

Today begins the process of officially saying good bye to one of my most favorite people in the whole world. It's not going to be easy to say the least.
When I first met Granny, to be honest, I was a little afraid. I guess back in the day, she was pretty blunt, so I think I must of kind of tried to avoid her just to avoid feeling awkward if she did happen to say anything. Sam and I had just started dating and since he was my first boyfriend, I was a little insecure how this whole "meeting the family" thing worked. Plus, in the spirit of being honest like I like to do on this blog :) I thought the name "Granny" was weird. What's wrong with Grandma? Why Granny? And what was I supposed to call her? She wasn't my Granny! Oh how that has all changed. I don't even know where to start. Guess you'll have to forgive my ramblings.
Granny was just Granny. She was Granny to everyone, not just those related by blood to her. Someone commented that they didn't even know her real name until a while after they met her. She was just "Granny"to everyone. That's how she liked it, and it just seem to fit. 
There are so many things I am going to miss about Granny. My world will take a while to readjust to be "normal" without her in it. Looking back, of course, I wish I would have made more of an effort to see her and be with her and just soak up her goodness but that is my own feeling, not anything she made me feel. She would always tell me something to the effect of "I'm so glad you are here and of course I love our visits, but I know you are a busy momma, so don't you worry about this old granny." We would walk around and she would show me her gazillions of flowers. Several years ago, I got a mandevilla flower and planted it in my big pot out front. I just thought it looked neat and didn't think too much of it. Granny, however, had never heard of it (shockingly!!) and loved it too. The next summer she told me she had bought one too and had planted it by her mailbox and let it trail up the post. She was pretty excited this last summer because she had kept it over the winter and planted it again and it was beautiful. Then there's me-I kill plants by looking at them I swear, let alone keep them alive over the winter and expect them to bloom in the summer! I would tease her about her green thumb compared to my black one, and she would say, "it's not a green thumb, it's just LOTS of years of experience". Several weeks ago, shortly after her diagnosis, we were in Garny for a birthday party and my heart just wasn't in the party. There were lots of people there, so I snuck out and went for some quiet time with Granny. After I finished sobbing all over her (several times), and calmed down a bit, we were chatting and she told me that she wanted me to have her mandevilla. Our conversation went something like this:
 "Granny! I can't take that! What if I kill it?!?!?! You know me and plants! My heart couldn't handle it if I killed your mandevilla!"
"You aren't going to kill it!"
"But what if I do?!"
You know how when you are having a conversation with someone and they say something that makes you kind of stop suddenly and think…did they really just say that? I had one of those moments at that point because Granny looked at me, smiled and "If you do, I'm not going to know and I'm not going to care!" I just had to laugh. Oh Granny. Still makes me smile when I think about it.
I haven't been around a whole lot of people who are close to dying, but the peace that Granny had was surreal almost. She knew she had this tumor and she was adamant that she did not want another surgery. Therefore, she knew she was going to die. And yet, she was the one comforting me! Anyone that was ever around Granny knew of her love for her Lord. She knew that death for her meant finally meeting The One that she spent so much of her life serving, The One who gave His all when he died for us. I knew there was a verse in the Bible about letting your light shine, but I couldn't remember the whole thing. When I found it, I found that it sums up Granny's life perfectly. 
      Let your light so shine before men, that they may see your good works, and glorify your Father which is in Heaven. Matthew 5:16
Granny's life was definitely a light shining forth. It wasn't because of her good works, or the fact that she was a good person, or that she had decided to love Jesus. No, it was because Granny came to the saving knowledge that she was a sinner and as such, she needed that salvation that only the Lord Jesus Christ could offer. She would tell you it wasn't anything she had done, but all what He had done for her. That light she offered was so that others would see it and want what she had-the perfect knowledge that her sins were gone and she was going to Heaven when she died. And what a light she had. I had to try really hard to think of a time when she was even the slightest bit cross, and even then I don't think it was cross so much as it was a little frustrated. She was always smiling, especially when she was around people. She was such a people person. She loved to encourage others with just a small word and seemed to know exactly what I needed to hear. There were times where she would tell me stories about raising her kids that sounded just like my kids.  It was usually a way to encourage me-as in I've been there, done that, I know exactly how you feel. She would be honest in that sometimes she didn't handle things right, etc, but I always felt better after having talked to her. That's not to say she wasn't slightly biased. She would always tease me that her precious little darlings would NEVER do anything to make a mommy frustrated. She liked to say how cute and precious they were. I would tease her that she just *might* be a slight bit biased to which she would reply "It's not biased! It's the truth!" :) She just loved them so much. The feelings were very much reciprocated. Kai would learn his verse for sunday school and then say "I gotta tell Gwanny my vurse, K Mom?"and she loved hearing him say it just as much as he loved telling her. Of course, that made him the brilliant as well as adorable in her eyes. :) My Darren boy adored Granny. He's taken her death hardest of any of my kids. Darren is the kind of kid that if he loves you, he REALLY loves you, and if not, well….he isn't going to give you hugs or anything like that, so you might as well not try. He loved going to visit Granny. The seemingly never-ending supply of oreos in her cupboard helped :) but he always loved to find her at meeting and stuff and say hi and give her a hug. When I told him that Granny was sick and going to die, he of course cried. "It's not fair Mommy! I don't want her to die! I want her here!" When I told him that she was ready and that she had lived a long time and was happy, he asked how old she was. I told him she was 87 to which his response was more tears and "Mommy! That's not old! She's not even close to 100!" Made me smile, even thru the tears.
Sam's cousin Allison said something on Facebook that made me smile too. She made mention of the "I don't care how old you are, come over here so I can give you a kiss" kiss. Summed it up perfect Allison!
Granny and I loved going to Thoma's (the little restaurant in Garnavillo) for shrimp. Seriously, they have AWESOME shrimp there. We would go and get shrimp and milkshakes. She told me once that she wasn't sure if we could be friends if I didn't like coffee milkshakes but she guessed she could overlook that slight flaw of mine. 
I think of the things that we are ALL going to miss about Granny is her prayers. I know for a fact that this person was a prayer WARRIOR. My friend Becky summed it up well in her blog post about Granny (click here to read the whole post) when she said

"And this woman is the epitome of a prayer warrior.  If she says she is praying for you, then she is.  If you know her personally then it is safe to say she has spent time bringing you before the throne of Heaven." 

There would be times when I would just feel so overwhelmed with Kai or Claire's issues or even other things, and I would send her a quick email or a message asking her to pray for me in regards to such and such and I KNOW that she would. Like Becky said, if she said she is praying for you, then she is. 
This morning, I came to work in the dark and the little office I sit in faces the sunrise. I watched it this morning thinking of Granny and wondering if they can see the sunrise in Heaven. I know it says that there is no need for the sun there and as I watched it, I just started thinking about how absolutely breathtaking the scenery is there. The beautiful sunrise here on earth is nothing compared to what she is experiencing there. Singing was always her thing. She LOVED hearing people sing, and I smile thinking about how beautiful angel songs must be. I picture here there, holding hands with her "honey" as she called him :) and singing along. 
So many things about the woman and her life and our relationship together have made me smile. I just needed to get all these memories out to remind myself mostly that it's ok to be sad and it's ok to miss her, but to not dwell on the sadness and loss. She wouldn't want that. I want to remember her smile and her laugh and all of the good times. I am going to miss you Granny, more than I can possibly imagine. Birthday parties, holidays, visits to Garnavillo just won't be the same. I will miss seeing you smile when Kai see you and waves at you in meeting. I will miss your encouragement and when you call me "my tiff". I will miss asking you all my flower questions and eating shrimp. I will miss you, just being you. I am so blessed to have been part of your life and have you be part of mine. I will see you again. Until then, I love you~

Wednesday, April 9, 2014

3 Years Ago Today....

3 years ago today my world changed forever. 3 years ago right now I was sitting in a tiny little room in the University of Iowa Hospital NICU overwhelmed and trying to digest and come to terms with the fact that there was something wrong with my beautiful little boy. Teams of doctors had come and gone, my baby had wires and tubes, and I had cried more tears than I ever thought possible. I think I have said it before, but I will never in my life forget sitting in that high office chair, leaning on Sam, sobbing and literally feeling like my heart was going to break right in half as my tiny baby was screaming while they tried to get an IV started in his poor little dehydrated body. I will never forget walking down that long empty hallway while the nurse wheeled him to surgery in a little incubator thing and having to turn and walk away from him as they entered the surgery area. I will never forget the physical relief I felt the moment he was placed back in my arms. I never wanted to let him to. It was just the beginning of tests, surgeries, doctors appointments and all the rest. Stuff that you NEVER think is going to happen to you. Weird birth defects happen to other people, not you. 3 years. 3 crazy years. It has FLOWN by but at the same time, that hospital stay seems like a lifetime ago and in many ways I think it is. I would love it if my sweet spunky little guy didn't have to go thru all the stuff he does, but I feel like I have learned so much in those 3 years. I now know more about a child's spinal and digestive systems than any normal mom should :) but more than that, I have learned that I can be stronger than I ever thought I could be. I know that this strength is not from me, but from The One that has a wonderful plan for my life and that of my little turkey. I have learned to lean on Him when I felt like I was going to collapse under all the decisions to be made and life changes that Kai faces. I have learned that with God's help, together Sam and I can do this, and you know what? We do it pretty good. :) This isn't to say that there aren't days that I just want to quit all the catheters and enemas and medical supply companies and doctors appointments....just say forget it and walk away pretending like he is normal kid. My heart hurts when I have to do catheters and he says "owie Mommy" for some reason or another. It still breaks my heart when my older kids ask me if Kai will ever go potty like a normal kid or if he will have to do this when he is a grown up. But then he crawls up into my lap, his hair all crazy in the morning, and wants to snuggle and help me mix Miralax in his juice. I see him jumping on the trampoline laughing with his siblings. In his world, catheters and enemas are normal, every day occurrences. He does absolutely amazing on the potty. He just sits there with his Kindle-sometimes for an hour depending on how things are "moving". In our world, he is a "normal" kid and I wouldn't change him for anything. His birthday was so fun. All he wanted was cake and people there to sing him Happy Birthday. :) He got lots of nice presents that he has been loving. He will talk your ear off if you let him and invited several random people to his birthday party including a salesclerk at Old Navy, a woman at the party store, the lady who made his cake and a man looking at donuts at Walmart who just happened to comment about his Diego cake. :) He is smart as a whip and loves to sing and talk on the phone. Screams his head off when he has to come in from outside and is still very attached to his pacifier (I know....he's WAAAAYYY too old, but lets be real here...the poor kid gets a tubes stuck in not nice places every day....I'm so ok with his pluggy when he's sleeping if it makes him happy.) He's at the age where he loves to make us all laugh and does it frequently. Hates white milk, but loves "dat brown milk" (chocolate milk). Loves baseball (but not off the tee-you have to pitch it. Mommy ordered him a kids pitching machine for his birthday-it's awesome for all parties involved :) ) and beating Grandpa at basketball. He ADORES babies-his favorite being "My Baby Emersyn" (a little girl I babysit sometimes) and will tell you that he has a baby girl growing in his tummy. And seriously...he is so stinking cute it almost hurts. :) Yes, he's naughty and so not perfect but he's mine. I truly believe that this experience has made me a better, more understanding and empathetic person. I have met some people and made some connections that I will be grateful for every day of my life. I would do anything to spare him the pain, but wouldn't change him for the world. He completes our family and Kai Geordon Brandt-you make my heart so very happy. I love you little boy!

Monday, December 30, 2013

Results of Iowa City Appt

I am TERRIBLE about updating this thing lately and after several people have asked how the appointment went, I knew I needed to get it done. Today is a good day for something like this! It's snowing, the wind chill is something like negative 30, Sam has the day off so he is putting together Christmas Legos with Darren, the other kids are keeping themselves occupied, and I don't feel like doing laundry! :)
Overall, the appointment went well. Dr. Cooper (the urologist) was VERY happy with the newest kidney ultrasound. On the last scan, there was some inflammation on the kidneys (which is a bad thing) but this one showed just a little inflammation on 1 kidney and none at all on the other, so he was very pleased with this and said we should just keep with the 3 times a day urinary catheters. Kai tolerates them very well. They are definitely getting much easier for us now too. We asked Dr Cooper about moving up a size in the catheters and he thought that would be fine. This tiny bit of difference in cath size makes a WORLD of difference in the speed that the urine comes out. Wowza...I couldn't believe it. Kai doesn't seem to notice a difference and it takes about a 3rd of the time, so that is pretty nice too. The only thing Dr. Cooper seemed a little concerned about was the fact that Kai has lots of bladder spasms. That's why he has wet diapers and stuff-the urine leaks out during these spasms. Since the bladder is a muscle, the continuous contractions make it bigger, just like any muscle would with lots of contractions. However, if the bladder wall starts to thicken, that is a bad thing, so he is watching that as well. He mentioned that at Kai's next appointment he wants to do another urodynamic test so we'll see what that says I guess.
The newest major thing we are doing are daily "bowel cleanouts" (aka enemas).  My little trooper is definitely NOT a fan but a VERY dear someone sent him a new Kindle Fire complete with kid safe case and Amazon gift card so that has helped a TON that he gets to play "my bery own Kinnel" with some new games and new Diego episodes. Every time I look at that Kindle I wish I could give you a big hug Very Dear Someone. It means so much.
Anyway, basically every evening Kai lays on his side and we put this catheter thing in his bum. We take tap water in a syringe and put it in one head of this catheter and it fills up a balloon inside his bottom. Then we pull it back and the balloon basically acts as a  stopper so that the enema solution doesn't come out as soon as we put it in. Then we put a solution of saline and glycerin in, put a cap on the catheter and he has to lay there for around 5 minutes while it does it's thing. This is when he usually starts to fuss and say his tummy hurts because the glycerin causes cramping. That's what it's supposed to do because the cramping is the muscles moving the stool along. After about 5 minutes we put his urinary catheter in, put a cap on that, move him to the potty, take out the urinary cath cap, remove the water from the little balloon thing, and in a perfect world everything just drains nicely in the toilet. It's not usually that easy though. We are still trying to figure out the right ratio of glycerin and saline and if we should give him his Miralax still and if so how much and all that fun stuff. Every person is different so there is no perfect formula and it can change daily depending on what he has eaten, etc just like a normal persons stool would change based on diet. Plus, he is obviously not a fan of the tummy cramping and it absolutely breaks my heart when he cries. The other day, I decided that I would just give it to him straight and be honest with him since he is such a little smartie. I told him that the tummy cramps make him toot and then his poops come out and that makes his tummy feel better. So now when he has a cramp, I say "what does an tummy owie mean?" and he will say "I have toot coming" and what happens after the toot? and he will say "my tummy feel better" and that seems to calm him down a little bit. He has to sit there for a while-usually around 30 minutes or so, but normally he does ok and just plays his Kindle or Sam's phone. Sometimes if he has really bad cramps, I sit by him and just rub his tummy a little and kind of talk him thru the cramps for lack of a better description. I'm glad we just have to do it once a day that's for sure! Sam has done it most of the time, but I am making myself do it too so when he has to travel for work, etc I can do it. Right now it's kind of a 2 person job to move him from the changing table to the toilet without causing a huge mess :) but we are getting it figured out. We've gone thru lots of Clorox wipes and have learned to just move the rug out of the way. HA! :) This is why I wanted to start this plenty ahead of when he was in preschool. I knew it would take some time for us to learn what we are doing and hopefully this way we will have it all figured out when he goes to school.
So that's where we are now! We have an appointment on the 8th with the neurosurgeon with some x rays and stuff, so that's next up on the agenda! Not really sure what he will do but I do want to ask him about repairing nerves and see what he says. With all the advances in technology I just feel like there must be SOMETHING out there, but then again our other doctors are pretty on top of things so I think they would have told us. Guess we'll see. Then we go back to see Dr. Cooper again in 3 months for another ultrasound and urodynamic test. We will probably see Josh-the NP that helped us with the enema stuff-again to maybe do some fine tuning and ask questions.
SO that's the latest in the continuing saga of Brandt doctors appointment! :) Thanks so much for all your interest and prayers. They mean a lot! Stay warm everyone!!! :)