First of Many Christmas'

So our first Christmas outing was to my parents a few days before Christmas. They decided to cook for me since I had to work on Christmas eve and would have to miss my Mamaw's Christmas. It was DELICIOUS!! Fried Turkey, dressing, Green beans, etc!! Thanks so much Mom and Dad!!! I LOVE YOU more than you know!! Here are a few pics I took of C in front of their tree with his new walker!! LOVE them!! He also opened his very first Christmas presents of the season. He got a Hilarious yet obnoxious Laughing Monkey, a hammer that makes noise and Scamper the movie!! An ALL time FAVORITE in the Krug house growing up!!

Stay Tuned, many more Christmas pics to come!!!

Courtney

Fever, Bad luck and Holidays!

So if you know my family very well you would know that Holidays in the Smith household are not usually a good time for us. Recap- Webb's first father's day- find man breaking into our car at the mall, webb's birthday 2010- Carter Diagnosed with Syrinx and non working shunt. The next week our car gets blown up in our drive way., Mine and Carter's birthday- Carter diagnosed with Grade 5 kidney reflux and has emergency vesicostomy the next day to prevent kidney and bladder damage. Our anniversary this year Carter has a Shunt Malfunction/Revision. Webb's birthday this year- Another Shunt Malfunction/Revison. Then a week later back in the hospital with a UTI. So with it being Christmas week, it did not surprise me when C started running fever on Saturday afternoon!

I decided to call the Neurosurgeon on call and they told me since he didn't have any other symptoms to wait it out and give him some Tyleonol/Motrin and wait and that if he had any other symptoms to bring him in. Well that night he did fine, his temp came down and hovered around 99.5 and he was symptom free(well except for some fussiness). So the next morning Webb left for the river with his dad to work on the cabin. So I was planning some shopping with Mom and Allyson that Afternoon. C was acting fine that morning so I laid him down for a nap and M&A came over. After he woke up and ate lunch he felt a little warm to me, so I took his temp- 102.6!!!!!!!!

So that landed us a trip to the dreaded Lebonheur ER. Usually we get VIP treatment with Carter having a VP shunt. But not this time. They were booked and there were probably 50 sick kids in the ER!!!! We waited 3 hours before being seen. I was NOT a happy Camper!! Thankfully we have uploaded some videos on my iphone so Carter watched movies, read books and was so good for the waiting. Carter's recent favorite movies are Mickey Mouse Club House and Backyardigans- the Pirates Episode, which is what he is watching here :)


During this time, webb was able to get home, pack our things, and get up there before we were ever seen. So after SEVERAL attempts to get an IV started and drawing some labs, Shunt Tap and having a CT and x-ray. We had no answers. Shunt seemed to be working fine(thankfully). They decided to keep us for observation. We didn't get into a room until 4am and Carter maybe slept 1 hour of the whole night, so when they let us come home the next afternoon we were beyond THRILLED!!

That night Carter threw up, and the next day started having a green runny nose and congestion. so it seems that it was all a Virus. This is your life if you have a child with a shunt. A simple virus with a fever lands you in the hospital with several Testing and long days/nights. This is why it is so important for us to be so diligent on washing hands and keeping away from sick people/kids.
This is one thing that I am nervous about Carter starting his Play, do Learn program. Which should start in the next week or two, EEK! Anyways we had a wonderful Christmas. and have a long post with Many Pics that I will have to do later. Too late right now. Here are some pics taken with my IPHONE, and the bottom is a video of how tired and miserable he is in the hospital. Poor Baby!!



Courtney

Carter's New Walker!! And MORE Progress!!!

I always believed that my baby would walk one day, but didn't realize that after he first started that he would make progress sooooo fast!!! It is really unbelievable to watch him and his determination!!! We finally got the walker that we once ordered at the beginning of August. The one they ordered for him the first time was WAY too big!! No wonder he wasn't doing very well with it. So I picked this one up on Monday afternoon and would you believe that Monday night he was taking steps by himself with it!! And who doesn't love the Lime Green?!?!?! Look at him GO!!! For some reason my little video upload feature is not working so here it is uploaded.
http://www.youtube.com/watch?v=Wt3U550CgJE
What we have been up to the last few days: work, work and more work!! Worked my three in a row and now I am off for a few days, with LOTS of Christmas shopping to do! Last night we went to Webb's Mamaw's Christmas party. I was fun to get together with the Family, then afterward we went to dinner with Ashley, Brent and kids. Today we will have yet another Christmas party!! I just can not wait until Christmas and seeing Carter's face when opening his new presents! Wish I didn't have to work on Christmas or Christmas eve, but atleast Carter has no clue about what day it actually is. So we are going to celebrate with Webb's family on the 23rd and Do Santa and my family on the Christmas Eve before I go to work.
Oh and Bridgette and I took the kids to enchanted Forest this week to see Santa. Lets just say that we got the "Screaming, Get me out of his lap" Santa pic this year! Ha they are too cute!!! will have to post pics of it later. But in the mean time: My handsome little man!



Courtney

MERRY CHRISTMAS TO US!!!

The boy that was born with an open spine.
The boy that we were told may never walk.
The boy who twice lost function of his lower extremities bc of a shunt malfunction, and we were told he may never regain sensation back.
The boy that has had 5 shunts, 1 spinal surgery and 1 bladder surgery.
The boy with endless determination and heart.
This is MY BOY and he is WALKING!!!!!!!!!
He has totally stolen my heart and I am sooooo proud of him and all of his accomplishments.
He is my HERO!!!!
Carter Allen I have learned so much from you, & you continue to AMAZE me and so many others!!!!
WOOOOOOOOOHOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!
Keep it up Carter Man!!!


Courtney

Dear Santa...... I can Explain.....

How cute are these???? These are one of our Christmas Cards this year. I have a more formal card, but also wanted to do these, before he gets too old for this type of cutesy stuff. He was probably thinking "A photo session involving cookies, now that's more like it mom." LOL. Anyways worked last night and slept most of today. Went out to dinner with some friends. Hoping for a fun, laid back weekend and to maybe take C to see Santa this weekend. Will post pics! Oh and BTW Carter Burnt his hand pretty badly this weekend and he has just been pitiful when having to dress it. I can only imagine how bad it hurts. Was baking cookies with his cousins and touched the outside of the oven, and it was Hot enough to burn him pretty bad. Who would have ever thought that an oven could get that hot on the outside? I hope it heels VERY soon and he doesn't get an infection from it!!! Will post a pic of it later and one with his bandage :( Here are some of the cookie session outtakes: SOOOO CUTE!!!!




Courtney

New Year's Resolutions!!!!!!

I have been such a terrible blogger lately. Heck, who am I kidding- I was never a great blogger!! But I am going to be trying something different now. It is my New Year's Resolution to do two things(but I am starting now!!!)- Start blogging more about Carter and his condition. I have been truely inspired reading someone else's blog and caringbridge about her son with SB. It is amazing how much Carter is changing and how much he is accomplishing lately and i want to Remember it Forever!! I think it will also be cool to have for him one day to read. Although I wish I would have done this sooner, I feel like I have missed out on sooo much!!! My second resolution is to start not having the computer out while Carter is awake and with me. It is so easy with a laptop to be on it while Carter is playing in the floor with his toys. I am not on it all day by any means and we do a LOT of playing together, but I do think there is always room for more PLAY and more PT!!! So that is it! Please hold me accountable if you see me starting to slack off with my posts!! oh not to mention I am going to try and post LOTS of PICS too(which I know is what people truley care about, :))
So what's going on Lately? Carter is Changing so much and getting stronger and stronger. He is starting to pull up on just about everything!! Today when Webb got home and put his keys on the end table Webb called my name and Carter had totally pulled up to get the keys off. Now that is WONDERFUL but also scarey at the same time! BC once his legs get tired, they just give out. He doesn't quite know how to get down gracefully yet. So if we are not right there with him he could fall backwards and hit is head on our concrete floors. I always joke that maybe we need a helmet for him. There is NOTHING stopping him. He is also talking a lot more! It is just crazy at this age how much they soak in!! One BIG thing is that he is starting a little school program next week. It is through special kids and families called Play do Learn. It is half typical pears and half special needs kids. The program sounds AMAZING! Their teacher to kid ratio is 3:1, which is just awesome. They also have a nurse and speech therapist. Also LATEX free(which is sooo important with SB kids- they are at risk for Latex allergies). So as excited as I am, I am a little sad too!! My baby is turning into a BIG boy!! I will add some adorable pics later!!!
Courtney

Carter on the Treadmill at PT!!

So this is Carter last week on the Treadmill at PT. THis is only his second time on the treadmill and he is doing great!! LOVE seeing the progress he is making! There were several months that he seemed to not be making much progress, but these last couple of months after his latest shunt revision he has just taken off!! This week we also ordered Carter's first walker!! Such a HUGE deal!! So proud of my Boy!! Keep up the hard work little guy!!

On another note Carter has been sick the last day and a half. Last night he woke up at 10 with a terrible cough, congestion, wheezing, a fever and very snotty. We all got only 1 hour total of sleep!! This morning we went in to the sick clinic, which was the first for us and he has a pretty bad Upper Resp. Infection. He had to have an Albueterol Treatment and they started him on some meds for his cough/congestion. We also have an Albuterol inhaler to use at home PRN for wheezing/ Resp. problems. After coming home from the Ped appt he took a 4 hour nap that was much needed and he just went down for the night about an hour ago. Praying tonight is better than last night!!

Courtney

Where is the time going?

It feels like yesterday that I was rubbing my tummy waiting to meet the precious life inside of me and now I am chasing around a very happy, busy, precious little boy!! I can't believe that Carter is already 17 months old!! He has changed so much over the last 2 months since his last shunt revision!! He is talking up a storm!! He says; Mama, Dada, Meme, Nana, Allyson, Ginger, Hi, Dog, No, Yumm, Eyes, milk, thanks, OK (I am sure there are more those are just the regulars!) And he really has changed so much developmentally too!! His favorite thing to do lately is climbing. He army crawls to any and everything that is at a taller surface and tries to pull up on it and crawl in it or over it! He also loves to act like he is flying in the air and flapps his arms as Webb whizzes him around the house like an airplane! This is so exciting and new! He has gotten so funny when we change his diaper to that he kicks and slaps so fast and so hard, all the while laughing with all he has. Its crazy to think that about a year ago he wasn't even really moving his legs at all and today he stood(with a little assisstance) at a train table at story time and played. He just continues to amaze everyone around him!! And on a VERY exciting note, he pulled up last week in the bath tub all by himself. We were taking a bath and he was playing with his ABC toys on his tummy when he reached up for the rail, pulled himself to tall Kneel and then to stand without ANY assisstance!! Ofcourse I yelled for Webb to come in there and he did it again!! AMAZING!!!!!!! We also brought a walker with home with us from PT this week to get Carter to practice standing at it and getting used to it!! We should order one this coming week!! Althoughit will be a while before he starts to use it (just the anticipation of using it is exciting!!)
These pics I took the other night sitting on the front porch for dinner and then after dinner let Carter eat some Banana and Chocolate Pudding which he LOVED. He has gotten very into trying to feed him self lately too.
Just wanted to update everyone on what we have been doing lately. We have been having a ton of fun and have had a couple of good Dr. Appt's too! So keep my little guy in your thoughts and prayers that he will continue to strive like he has been doing for the last couple of months!!! (I guess he is playing catch up from the couple of months that his shunt wasn't working!) Go Carter GOOOO!!!!!!!!!!!!!!!!!!!!


Courtney

HAPPY FATHER'S DAY!!!!!!

What a wonderful day to be called off of work this morning. Instead of getting up at 5:30, we didn't get up until close to 10!!! Carter slept until 9:50 this morning!! WOOHOO!!! So after some Sunday morning snuggles I got up and made biscuits and gravy (my mamaw's famous brown gravy- YUMMMMM!!), turkey bacon and cheese eggs!! Then off to pool at tommy and dora's we go. We hung out with the fam all day relaxing in the pool and eating wonderful food. Carter took a long nap, while I layed out on a float in the pool for the first time since I had Carter. It was GREAT!!! And then after he woke up we put him in the pool, and he LOVED it!! And one of my favorite parts of the day my father in law got an ice cream maker for fathers day and he made some DELICIOUS strawberry ice cream!! It was a great day, although I didn't get to hang out with my dad today. I plan on doing that sometime this week!! Here are some pics that I did for Webb's desk at work. I was so excited to give them to Webb and he LOVED them. I can't decide which of these I love the most, so I will include both!


I hope everyone had a great Father's day, bc we sure did!!! Oh and on a great note, our car didn't get broken into this year like last father'd day! Woohoo!! LOL

Court

What we have been doing over the last 6 weeks

2 Shunt Revisions, 1 VERY SCARY seizure and LOTS of Dr. Appts!!!

This is why I haven't updated my blog lately. BUT, after seeing Dr. Boop today, Carter's shunt is finally showing that it is working!!! To make a VERY long story short about six weeks ago(the day of the terrible floods) on a Saturday after noon Carter woke up from his nap with a 102.5 fever. I immediately called Dr. Hanson, who told us to go straight in to Lebonheur ER. So we get checked in and the resident comes in and ordered a lot of test including at shunt series, cbci, crp, and neuro consult. Then the attending comes in a couple minutes later and says that he thinks that Carter has a virus and that he is only going to run a CRP. The CRP comes back in the normal range, so he discharges us home. We questioned him before leaving about seeing Neuro and doing more testing, but he thought that it was not necessary. Boy was he wrong!! So out the door we went. On the way out we discussed how we were excited to be going home although did not have a good feeling about it. So just a couple of minutes down the road Carter started PROJECTILE vomitting and started having a seizure where he became totally unresponsive, his eyes rolled back in his head and became totally gray. I have never been so scared and freaked out in all my life!! So Webb pulled a U Turn in the middle of Sam Cooper(ran over a small tree) and sped 90 miles an hour down Poplar and went through 5 red lights to get back.(BTW there was a cop following us the whole time and we had no clue). So I ran back in, completely covered in vomit with a limp baby. Immediately there were several drs and nurses in the room. The same attending came back in and told us that he still thought it was a virus with a febrile seizure(UGH!!!) but that he would order a shunt series and neuro consult now. So a little while later Dr. Muhlbauer's Fellow, Dr. Kimbal came in and told us that Carter's ventricles have quadrupled in size since jan and that his shunt was def. not working. At this point it was about 2am and they scheduled surgery for 7am the next morning. Dr. Boop was out of town, so Dr. Muhlbauer did Carter's revision. After Carter's surgery we just hung out in the room for the day and got to come home the next morning. Carter was much happier after we got to come home. I was so happy to be home, but still pretty shaken up from the whole thing. As a mom and nurse I just keep questioning what would have happened if we would have been home and Carter would have been in his bed when the seizure happened. I know I need to quit doing that, but it is HARD!!!
So the next few weeks Carter was doing OK, just a little on the fussy side, which is not like him at ALL!!! He is usally the happiest baby on the block! So a couple of weeks after his surgery we have his post op visit and every thing goes fine and he tole us that we didn't need to come back for 3-4 months. That same week we had Carter's 15 month check up. First off I want to say that I CAN NOT believe that my child is 15 months!!!! So he weighed 24 and a half pounds which was 42%. He was 29 inches and his head circumference was 49 cm which was up 2.5 cm in 3 months. So right after leaving Dr. Hanson's office I called Dr. Boop's nurse. We were not quite sure if the growth change had occurred before the last revision or if his shunt right now wasn't working. So the nurse called me back and said that she thought that it was probably fine that she would let Dr. Boop know and would call me back either way. So no phone call over the weekend. And no phone call on Monday, which was Memorial Day. So Webb left Monday afternoon for Baltimore for a conference. Well wouldn't you know that on Tuesday morning while I was at work at about 8:30 I received a phone call from Dr. Boop's nurse saying that Dr. Boop wanted to see Carter that Day to measure his head circ. and check him hisself. So Dora met me at his office around 9:30 with C. We waited for over an hour and then he checked him out. He then had a catscan and Dr. Boop walked in and said "Your not going to believe this, but Carter's shunt isn't working!!!!" WHAT????????? I was floored. Not even a month before we had just had it revised. He also told us that he was going to change the location of the shunt and that surgery was scheduled for the morning. And Webb at this time was in Baltimore. He quickly got a flight home and missed his conference (Thank you St. Jude for the speedy flight home) and I went home to get some things together and to clean up a little before surgery the next morning. (Thanks Allyson and Courtney for all the help) I don't quite know what it is, but I have to have a clean house and laudry done before I bring C home after any of his surgeries. I guess its the nurse in me that thinks about all the bacteria lingering around! I guess its also a way to help me deal with the stress of it all. Who knows, but my house was spotless when I brought my angel home! After the house was clean we went to eat at my parents house, before Webb got home and I took all of these pics. This sure doesn't look like a baby whose shunt isn't working does it?





So the next morning we were there bright and early awaiting surgery. Let me tell you as a mom that has had to hand off her baby several times to have surgery, it NEVER gets any easier!!!! After the surgery this time, he was in a lot of pain. We had to give him Morphine twice to help him sleep. Poor baby. But the next day we got to come home. It still baffles me that 24 hours after having brain surgery you get to go home.
These pics are from the second surgery, the day after surgery.

and this is how we found Carter after he came home and went straight to sleep, poor little guy was exhausted!!

The last couple of weeks have been better other than C has been running a low grade fever, which had me a little freaked, but we had our post op visit with Dr. Boop this week and it seems that this shunt in the new location is working. HOORAY!!!! and that he didn't think the fever had to do with the shunt. Just have to monitor him very close to make sure the fever goes down and does not get any worse. BC shunt infections are very bad and if he developed one we would be in the hospital for several weeks. But you can develop a shunt infection up to a year after it is placed, which is a scarey thought! So we are doing better now than we have in the last 6 weeks!!
Oh and I forgot to mention that the day of Carter's surgery was our 3rd Anniversary. I am so thankful for my husband and my best friend. He is my rock and keeps me grounded. I truely do not know what I would do without Webb!! So big holidays in our family have proven to not be such a good thing. Last year on Mother's day we were in Lebonheur for a fever for a week, then Webb's birthday his car gets blown up in our driveway and then father's day our car gets broken in to. I think that we deserve a little break now don't ya think.
And if you are wondering if this has slowed Carter down at all is HAS NOT!!! Over the last couple of weeks he has been thriving. He is finally saying MAMA (which is the best sound in the whole world), his is rolling all over the place, crawling everywhere and FAST!! and has been doing great with his braces. He even started signing "all done" this last weekend after finishing dinner at Cracker barrell!! I am so proud of my boy!!! I love him more than words and it just keeps getting better.
Sorry this post is sooo long, but hope that our next 6 weeks are NOTHING like our last! Thanks everyone for your thoughts and prayers during this hard time.
Love - Court

Helping Others...

Sooooo I have been thinking lately about using this blog to help other parents and children with kids not only with Spina Bifida, but those with other health problem/ conditions that are similar to Carter's. We have been through so much and have learned so much over the last year that I would love to be able to help anyone else that may be going through something similar! To start out, I will give everyone a brief description of the health conditions that affect my son.
Carter has Spina Bifida Myelomeningocele, Hydrocephalus, Neurogenic Bladder and Bowel, a Syrinx, Low Muscle tone, Stage V Kidney Reflux, and now Allergies and possibly Eczema. (I think thats all?) We have had to do a LOT of research for each of these conditions and have had to become very creative. I will start working on a post for one of these conditions. What do you ladies think? Is this a good idea? I feel like while I was researching all of these things I would come across some blogs and get great ideas/ info that has really helped me out and would love to do this for someone else!!
But in the mean time I have gotten my NEW CAMERA!!! and a new computer monitor and calibration system!! Woohoo!! Here are just a couple of pics that I took last week with it!!