Well its been a few weeks since I have posted anything. Korbin has had a really good summer.  He has been going to summer school and playing very hard! He is reading 70 words a minute now!  we are still working on the compreshion side of things. :)  Korbin will be in the second grade... School starts Aug. 20th!!! We will make a quick to Milwaukee Aug 16 for a check up with Dr Calkins.  The treatments have gone really well this summer.. however the last week or so Korb has said he is full and he hasnt ate anything. So i am a lil nervous about that...  Korbin has been a really BIG helper for mommy, mommy tore a tendon in her foot and Korbin has been helping very well and following directions!  We had our pictures taken a couple weeks ago so I will be able to post them pictures soon.

 Korbin had some minor surgery this morning, I didnt know he was going to have it until after we got here, they changed his C-Costomey Button, which he has to be "dwlighted" for. He did well, he blood a little more than they like, as long as there is no blood around the site in the morning we get to go home. ( we are currently resting at the hotel). IF there is blood they will have to pull the button and put a different one in and change the size. Korb has lost enough weight since his surgery in Dec. that it has affected the fit of his button.  However Dr Sood (gi doc) was VERY impressed how well the treatements seem to be going, he said that we have a 57% chance of maybe getting rid of button (long term maybe in 2 years). He doesnt have to see korb for a year, however we have to have check ups with local peds doc. As far as the surgery side of it, were not released yet. It maybe a few months yet, Dr Calkins (suergeon) fears scar tissue because of the leaks and infection.  If he begins to have scar tissue it could block the colon (then he will have to have surgery). So he wants to keep a close eye on it. Thank you for being so supportive of us and praying for us.

hey i am trying to figure out how often i should post... So could you please email me iowaqtpi@yahoo.com and let me know real simple if you still watch post and how often you check once a week, once a month or once every 2 months just so i can have an idea how often to post...

We will be heading to milwaukee june 3 for check up and some tests...

Korbin Christmas Morning in hospital

Mommy and Korbin Easter Sunday

Korbin was named hero of the week for website

Mommy and Korbin at Autism walk April 14, 2012

Mommy, Korbin and Captives Set Free Band at Autism walk

Can I just say its been kinda nice not having to write here for almost a month. However I bet some of you are wondering how lil man is doing.  He is actaully doing well, he has returned to school full time, where his lil classmates are so glad to have him back! We are still doing nightly treatments where he has to sit on the potty for an hour, however he really does good with it. On april 14, 2012 we had an autism walk for our community, I am the one who planned it and Korbin was so very excited about it. We had about 250 people show up on the rainy day to walk with us. We were able to raise $3000.00!! Just so very excited about that! Korbin is truly ready to be done with school and just be home and relax, I think that he gets way overstimulated at school. but he just keeps pluggin away! He is such an amazing lil boy!  We will return to Milwaukee June 4 where it will be his 3 month no surgeries check up. Really excited to see if the treatments been working, they will do xray and studys to see if his colon is trying to wake up. They have determined that he has a sleeepy sluggish colon. Just wanted thank you for praying for us and thinking of us over this lengthy time!

Lego Land Pictures

 Korbin was SOOOOO surprised when we pulled up, he had his blankie over his head... He just couldnt believe we were here.... :)

March 26 update...

Its been almost a month since I wrote here, hyperbaric treatment was a huge sucess! We went to Milwaukee last week and was released from the surgeon however we have not been released from GI. Korbin had a Xray down and it showed that he is VERY full of poop! The treatements we have been doing at home are not working they are just going around the poop and not pushing it on down.  I was very heart broke I thought things were moving along better. Korb continues to be happy and in good spirts most the time. We have started intense treatments at home, he has to sit on the potty for almost two hours a night. He is such a little trooper. On the way home from Milwaukee we went a different way home and I surprised Korbin big time by stopping at LegoLand Near Chicago and he was so floored that he couldnt even flap! He froze! :@) It was the greatest!!!! He truly enjoyed himself, been all winter since I seen that happy happy smile that he has! I will up load some pictures later... thank you for your prayers.. please pray as they have talked about MAYBE another surgery! I am not going to go into details now cause its only talk, however just keep praying that these home treatments work!

We had a BREAK THROUGH!!!!! I was on phone with another parent talking about walk... I could see the light in the bathroom on but wasnt sure what Korb was doing... I hollared and asked him what he was doing and he says " oh just pooping duh mommy..." I said on the potty he said " yep sorry i got it all over..." I flew off the sofa, he really didnt get it all over (lots of poopies in the potty was what he was trying to tell me) he reallly pooped on the potty all by himself with out me telling him to go do it and NO HOOK UP! I think things are starting to work I am really excited! Very proud of you lil buddy I know your trying so hard to do your best!

Korb also has been doing 2 weeks of hyperbaric treatments and today was his last day... I will post some pictures of that later... He gets to start 1/2 days back to school on Monday!

Update

Korbin is out of surgery heading to recovery...

monday 27 2012

Meet with ENT dr this morning they will be doing Surgery 6:15 in the morning... They will put tubes in his ears so he can do the hyperbartic treatments, ( we call it the space shuttle) thats mommy quick thinking so korb dont freak out. Korbin having asbergers has really opened my eyes to a whole new world. Then this afternoon we met with Dr Arnold the wound speciliest and he said (open area) under the surface of the wound.  Korbin will start treatments on Wednesday after we meet up with Dr Williams his Primary dr.... my goodness I am starting to have trouble keeping all the doc stright!  Please keep praying I think we are finally seeing the light at the end of the tunnel....

feb -26

Had a busy day, korb played cars on the patio today, the weather was amazing. It was 60* out!
Well this is going to be a busy week...
Monday we meet with ENT dr to see about getting tubes for Korbin and then he will have surgery to put tubes in his ears, hopefully on tuesday... Then later this week he will start the hyperbatric treatments, he has to have the tubes so the pressure of the hyperbatric treatments dont blow his ear drums... Then he starts his homebound school this week.. he will have 5 hours of school during the week. Trying to keep up with his studys we been doing ALOT of work at home, but still need some teacher instruction to help us through. He LOVES to read! He is really sounding out words now and trying to figure out " mommys words"  he will say ..... " hey mom... can you tell me that mommy word"  i make him try to sound it out first sometimes he trys really hard and other times he just wants to know what it is... ill try to keep you posted... we leave march 21 for milwaukee check up! i am hoping that his wound has really taken off and healing by the time we go!

update 2-24-12

Well Korbin continues to make good gains at home.  Monday Morning we will go to the ENT doctor and meet with him, they will be putting tubes in Korbins ears. Then we will start the hyperbaric treatements. The doctors really believe that will help his healing process. He can not go back to school until its completely healed... Next week he will start working with his homebound teacher ( which happends to be his specail teacher that he already has worked with at school)!  He LOVES to read! He reads EVERYTHING!!!!  I am really excited for him and sping so we can play! We have had to be so careful the last few months! March 21 we will head back to Milwaukee for a check up! However we have been going to Dr Williams here in Burlington often just to check up. He has been sooo amazing and helpful!  Please say a little prayer for his pain, he never complains about it, but I can see in his eyes that he hurts.

Korbin gets to leave hospital but we have to stay in Milwaukee over night and have one more check up in the morning

Here is his mailing address
Korbin Swenson room 921
Children's hospital of Wisconsin
9000 west Wisconsin ave
Milwaukee wi 53226

Korbin is out of surgery and doing well they were able to catch the infection before it got to the muscle!!! Unsure when we will get to go home...

Korbin is in surgery again he has infection in his wond from where they sowed him up

Friday Morning update..

Thursday:

Lots of pain today, he had a bite of jello but pain over took that.. Still on lots of morphine... He did have a treatment tonight and it was productive but he is wiped out now... Our big prayer request as he begins to eat is that he will be able to keep it down and pass on through and no infection... His site is pretty red..

Friday:

Korbin has had a very busy morning.  The school teacher came in and worked with him, I got to go get a much needed coffee!!  Then as soon as she left “Savannah” (therapy dog) came in for a visit! Korbin loved that! 

I spoke with both of Korbin’s surgeons and the pain team this morning. Our goal today is to try to get korbin off the morphine pump and try to do some pain medicane orally. Also working on drinking more… Korbin was begging to eat a banana so Dr. Calkins let him have half of banana and it stayed down! Now we just need everything to work on the inside!  I am sorry I haven’t posted much… Korbin has been very very clingy and wants me to hold him. His pain has been off the charts. He usually don’t say much about pain, but Wednesday and Thursday he was very vocal about his pain!  He has been very crabby too! I cant blame him, if they would have played with my insides like that I think I would have been much more crabbier than he is being.

There was talk Monday letting him try solid foods… (although he got to have a couple bites of banana today, they don’t want to rush, they said we really need to wait for his colon to wake up because he could “choke on the food”...)

This is going way better than the last time, even the docs have shared that with me… They also shared how independent he is… no idea where he gets that from ha ha

He is sooooo bored that he is "going for a ride" ... raising the bed up and down lol.. I told him no and the nurse told him its ok... lol

Ha ha

I was just trying to get korbins socks on him and he says.... " nooo momma nooooo.... Your going to kill my colon" lolool

Update 11 am wednesday

So I Finally got a chance to update...

Sunday we arrived in Milwaukee Safely

Monday Korbin had Xrays and CT scans.. The looked good as far as the leaking however the dr noticed that the colon was starting to collapse.

So Tuesday Morning Korbin went in to surgery to reverse his stoma (colostomy bag site) they also stuck a balloon device within him and pumped his colon back up and then removed the device and balloon.  Rough afternoon, but surgery went very well.

Wednesday Korb woke up at 4:30am with pain, he has on a continues morphine drip and then he can also push “the button” to get a little more if needed. He is in lots of pain this morning. He has gotten up and taken a couple walks, this last time he cried all the way. It was his idea to go, I tried to tell him we should rest, but he said “ NO THAT NOT GOOD IDEA” So we went… now he is resting.. Hopefully he falls asleep he could use a nap!

He can not eat or drink anything until the weekend. We have to wait for his colon to wake up. They are going to flush his colon ( use c cosotmy button, like treatments we were doing at home)  later this afternoon and see how it goes.

The dr said we will for sure be here a week, probably more like 2…  Well… going to get going on my homework I was able to borrow a laptop from downstairs…  Please pray for Korbins pain to go away.. and strength that I can focus and get my homework finished up.

Feb 7 10 am update

Korbin is out of surgery and heading to recovery

Afternoon update... Feb 6 2012

Well, the test went good this morning. Surgery will be tomorrow at 7 am. They will reverse his stoma, however the xrays showed that his colon has started to collapse, Dr calkins thinks this is from not using it in 6 weeks. They will use a balloon device to expand it out a little and see what happens. He hopes that the balloon will be all he needs.  The balloon will be blown up and then let down and taken out same day! We are looking at being here at least a week, realisticly he said more like two weeks. We have to wait for Korbins colon to respond. I am very worried, just thinking about how last time went. I have had my share of tears today.  The kinda upside to today was Korbin was playing with a little boy and us moms started talking and the little boy is going through what Korbin did 2 years ago she was so greatful we sat and cried for a few minutes together. I learned crying with a complete stranger is so different than crying with a close friend. We promised one another to keep in contact, they will be having some procedures done tomorrow as well. So please say a lil prayer for Nora and Juila...We are going to go to "The domes" tonight, its a flower thing that you can walk around in and they have a speical light show. Then to bed for us, we have to be up and gone by 5:30 we have to be hospital by 6 for check in and start the sleepy medicane.  Ill keep you posted best I can... Unsure how long surgery will take...Ill post as soon as I know!

Feb 6 quick update

Hey just a quick update were back in Milwaukee drove up yesterday.. Korbin had tests done this morning at 9am ... We will meet up with dr calkins at noon and discuss what the test show... We are hoping they show no leaking and things have healed well... If So then he will have surgery at 6 am tomorrow to reverse his stoma and get rid of his bag!!! I'm nervous what the doc may say... Please pray for korb as heis very wond up today!

We are having a mid morning breakfast... These chocolate donuts are ammmmmmmmmazzzing!!!!

Jan. 17. 2012

Well its been a few days since I have posted...  Korbins ostomy bag has came off in the night 3 nights in a row now! Its been very frustrating! Yes I have hit the point of being totally frazzled, but I just keep moving on. Korbin has been such an encouragement to me through all this!! Hes the one going through all the pain and he has not complained about it! I know it has bothered him, however he just laughs when the dr ask him if he hurts anywhere!
Tomorrow Korbin will have his first day back to school! He will only go for the morning. I am really nervous but excited for him! He is very excited to see his lil friends he has missed them so much!!
Being Korbins Mom has taught me alot of new things, specailly that I can do "nursing skills". Its been an intreasting ride learning all the medical stuff I have learned, and to hear Korbin us the big medical words is neat to! He really knows whats going on with his lil body he is so smart!
Please pray his stoma ( ostomy site) will not hurt and he will have a good day at school tomrrow. Also pray as we approch Feb 6 that his lil "pipes" will be healed and he will be able to have the next surgery.
One more request please pray for me as I have started back to school full  time today, my work load  is heavy this sesemster. I am very excited tho because it is "group therapy and theory of counsling" classes! Just getting closer to being a counsler! :)

This picture is at the McDonalds in Milwaukee, and Korbin said "mommy look  juicebox"

Jan 13 2012

Goodness that was a “quick trip” to Milwaukee.

 This last week Korbins stoma ( the place that they made for him to have the ostomy bag) has been bleeding.  He has had a very low fever of 99.9  I took him to Burlington Hospital but they wouldn’t treat him they told me to contact Milwaukee ( which I am very upset about). Luckily we already had an appt for a follow up from surgery.   So we seen Dr. Calkins on Thursday, he is such an amazing surgeon! He walks in and says “ hey korbie doodle how ya doing bubba”  He is sooooo personable!! Just really blessed to have him as our surgeon!  They did a quick “surgery” right in the office; they removed a layer of skin because korbins poop was eating way the good skin. Then they put a barrier on it, hopefully we caught it before infection set in.  Dr. Calkins said that Korb is recovering very well for everything his lil body has been through. So our next trip will be February 6, he will go in for major testing to see if his “new” colon is going to work.  IF it works and no leakage then Korb will have surgery on February 7 and they will reverse the stoma and he will no longer have the bag!!  Yes we will still have to worry about bad bacterial infection for about another month, because Korbin was exposed to so much bacteria when it leaked the first time.  But Dr. Calkins said” Korbin is a real fighter and I don’t see that happening”! J

On the way home tonight, we stopped in Monmouth and seen my brother, Korb got to have a little tractor ride, man he was soooooooooo excited! Thanks Uncle Cheesey you the best!! J

Korbin will get to start back to school this week doing half days! “YEAH!!!!!!!   He is ready to be back with his lil classmates he missed them so much!

Well I better get him tucked in for the night, he has had a very long snowy day! Thanks again for your support, love and prayers!

Jan 11 2012

Just a quick post this morning, its Jan. 11. 2012 We are getting ready to head to Milwaukee. I had Korbin in burlington ER last night because of low grade fever and bleeding around stoma. Dr. Calkins Called and wanted to check up on him and see how he was doing kinda werid how this stuff surfaced. Really frusterated with the Burlington ER they told me to just " call milwaukee and follow up with them" and " you be better of going home and changing his dressing, by the time I order it you could be home and have done it twice" AGH I have lost alot of faith in them. I will keep you posted as much as I can...
Right now.. we got to hit the road!!

Jan 4 2012

Well its been a few days since I wrote a blog….. Ever since we been home its been busy busy or trying to rest. Korbin is recovering well, he is still very tired. He has pain, but tells me he doesn’t, I can see it in his eyes, he tries to be so strong. We went to school today to see his little classmates, boy they had LOTS of questions for me after they  almost tackled Korb to the ground.. It was really neat to see them interact act with Korbin and ask the questions, they were really concerned about him!  He will start back to school next Tuesday and do half days, we will see how that goes. I am just so blessed that we are home and God has placed his healing hand upon Korbin. Please pray for all our little friends that are still at children’s hospital and Ronald McDonald House, they  have been so amazing and support of us!  Also Feb 6 We will head back to Milwaukee for another surgery. They will reverse his ostomy site, I am praying this time comes quick. Every time I change it he winds up getting sick. HOWEVER I think I had a break through tonight, I tried something different but was able to save the bag and he didn’t get sick on me!  We will try again tomorrow and see how it goes, I found out today the bags are $64 for 10 bags…  I will be trying VERY hard to save them where I can!!! I couldn’t believe how much they cost! Anyway, Just wanted to thank you so much for your support and prayers over the last few weeks, it has been bumpy ride, but we made it through  were not completely out of the woods but we are truly on a better path…

WERE HOME!!

Well we got to leave the hospital on Sunday, upon the Dr. Calkins learning that I had been changing Korbins ostomy bags and really attentive to Korbin, he said that we could go on  home and not have to stay at Ronald McDonald House.  Korbin slept very good in his own bed last night, only thing is that his ostomy bag popped off in the middle of the night.. We have spent the day over at mom's, she took Korbin for napolies, that is his most favorite and his favorite waitress was there. Were bouncing back slowly, going to take a little time, he will stay home from school this week and do half days next week. thank you for all your prayers and support!