Colton-cephaly

March 15th, 2012:

We went to meet with Colton Neuroglogist to have our usually meeting with him every 2-3 months and to go over Colton lastest MRI.  First Dr. Peterson checked out Colton see what he could do and how he reacted to different things.  As he was examining him he kept saying normal, normal, normal... hmmm, normal.  He told us looking at Colton MRI and seeing what he can do it doesn't match up.. which is a great thing!  Colton is doing a lot of what an average 6 monthish baby should do.  He has great social skills, and is reaching for toys and really noticing what is going on around him.  The only thing Colton is lacking a little is big muscle strength.  He should be starting to push up a little more on his hands and sitting a little better.  But for what he has been through and how his brain looks, he is doing amazing!  No stiff muscles or using one side more then the other or anything like that.  Which is amazing news! I love to hear that he is doing so well!!  And to hear the word "normal" is so refreshing to me, normal can have such a range but for Colton to be anywhere near "normal", whatever that may mean, is really strange to hear. Colton is far from any "normal" baby but with everything all the doctors were telling me while I was pregnant just brings tears to my eyes and takes my breathe away just to know that he is doing things that they didn't expect him to do.  Colton will be Colton and he will show us what he is capable of, and not matter what his capability is we will love him more then anything and we will always be so very proud of him.

Colton is still stumping all the doctors on what his Diagnosis is.  We have heard a bunch of terms thrown at us but it seems like every time we see a doctor a new one is put out there... So brad came up with a great term.. Colton-cephaly... and that is just what we are going to call it for now.  I don't think Colton will ever have just one DX he has a few different characteristics of a bunch of different brain abnormalities. Here is a list of some of what they think Colton has (because at this point I don't think they are very sure on anything):

- Hydrocephalus
- Septo-optic dysplasia
- Optic nerve hypoplasia
- absence of Septum pellucidum
- He has a "fold" in the back right part of his brain and some extra fluid there.  (maybe schizencephaly, or holoprosencephaly, but they don't think either one)
- chiari malformation type 1
- partial agenesis of the corpus callosum
- calcium deposits on brain
-missing part of his skull bone

I honestly am not sure if any of these terms over lap each other or not, to me a few of them sound very similar,  he has a lot going on with his optical nerve.  But his brain is looking better, expanded a lot more and the part that isn't developed right is changing.  He has brain and LOTS of it!!!! So for now this is kinda what is going on with him, but he has the doctors stumped again.  They really don't know what Colton DX is... so for now Colton-cephaly it is!

in the waiting room at the Neurologist:

Playing with Daddy while we wait:

MRI and Review- GREAT NEWS!

Febuary 27th, 2012

We went into PEDS Sedation at 6am for Colton get his MRI and MRA done.  It went pretty smooth.  Colton wasn't to bad on not being able to eat breakfast.  Took them a few tries to get his IV in but other then that no problems at all.  Colton is a PRO at getting sedated and bounces back to himself pretty quickly.

a couple of days later I went to meet with his NSG to go over his MRI.  And it was an amazing appointment!  His brain has expanded so much, it's amazing!!! his brain is also changing a ton.  And his NSG brought up a new diagnosis for him... schizencephaly (not very familiar with this diagnosis).  Instead on HPE she is leaning more towards this new diagnosis.  Not that it really matters what Colton diagnosis is, because Colton will show us what Colton does not some Label they put on him.  I am very excited that HPE could no longer be his diagnosis though.  HPE prognosis isn't very good, there isnt' very many adults living with HPE.  Schizencephaly isn't as bad of a prognosis and there are many more adults living with it.  So for me this is just a little weight lifted off my shoulders.  Since Colton has been born it's always in the back of my head that the doctors told me he wouldn't make it, and just wouldn't be with us long.  So I am just so happy to see him doing so well and thriving as much as he is!  We are just so blessed to have Colton he is such a miracle baby.  Thank you God for him and for everything you are doing for him.  Thank you for healing his brain and allowing him to be with us.  I couldn't ask for a great gift then the gift of my children.

Here are some pictures from his latest MRI:

this scan shows his chiari malformation

His brain growth is AMAZING! February 27th, 2012

This is a MRI from back September 26th, 2011

Look at how much his brain has GROWN!!! :)  WE ARE BLESSED!

New glasses!

About 2 weeks after going to the opthamologist Colton got glasses!  We picked out a pair made by Miraflex. They are very bendable and all plastic (besides lens)  And they have no nose pieces so when he rubs his face on things it doesn't go into his eyes.  It has been a little bit of a struggle to keep them on him... but not to bad!  He like to take them off and lick them!  I can tell they really help his eyes.  When he is wearing them his eyes don't cross in as much, a little bit but way less!!  And I have to say he looks ADORABLE!!!


First Picture with his glasses on!!

So handsome!

Love to play and laugh because I can see!!

Lots on my mind...

I have learned that with Hydro to expect the unexpected..  I feel like my mind is always wondering about Colton.   Worried about every little movement he makes.. thinking is it a seizure, is it a "normal" thing or is it just a Colton thing.  Colton has been doing these weird movements lately that at first to me looked like he was trying to fly.  If he is laying on his belly he will throw his arms and legs out and kind of move them back and forth like he is swimming.  I thought awe Colton is trying to crawl, yay!  But as the days go on and I see him doing it more I think, is this really him trying to crawl/ getting excited or is this a weird movement his making a neuro thing... I guess I will just watch him and see. (it's always a wait and see with Colton, during pregnancy and now with him as well) Colton also is teething, or I think he is teething.. Fussy, drooling, runny nose, a slight cough and chewing on everything!!  But with hydro makes me wondering is it teething or is it more...

Colton head circumference hasn't gone up to much the last couple of months... He went from being off the charts when he was born to about 50% down to 10% at his 4 month check up. If his head doesn't start growing it could mean a couple of different things.  It could be that his bones have already fussed together, it could mean his brain stopped expanding, it could also be that Colton brain hasn't expanded enough yet to really push the bones back out again.  So this is something we will look out for.  Hopefully we can get the molding helmet soon and start to push those bones around ourselves to help from him not fussing early and not being so overlapped.

No matter what he does I am always wondering is it normal or not... Colton has taught me to enjoy every moment whether good or bad.  Every time he smiles it make the world stop and I just look at him and enjoy it!  But I have to admit I am not always just enjoying the moment, sometimes I wonder.. is this "normal"  Over the last few days I have figured out that "normal" for other babies isn't going to be what is "normal" for Colton.  I don't think I will ever stop wondering, worrying or second guessing if he is sick, teething or shunt related but I do know that I will enjoy every single moment.  He is amazing and we are so lucky to have him and no matter what comes our way I know that God has put us here for a reason and even if we don't understand the reason, there is a plan... it's God's plan for us!  I thank God everyday for putting Colton into our lives.  It may not always be easy but it's worth it!


Colton looking cute in his sunglasses:

Teething??  he loves his Sofia though!

Update on Colton

Since I last wrote in here Colton has had a few things going on.  I am just going to sum up the last 3 months.

December:  We had family come into town for Christmas and it was a pretty busy month.  At one of the neurosurgery follow ups we had decided that Colton needs a molding helmet to help his head shape a little better.  If Colton doesn't get this helmet then most likely his bones would fuss early and he would need reconstruction surgery on his bones, we are all for anything that will prevent another surgery to Colton later on.  It's been a real struggle trying to get our insurance to cover this helmet.  We were denied by tricare at first and now we are in the middle of an appeal.  But all in all it was a pretty good month.  Colton had a blast during Christmas and even tried to pull some of the wrapping paper off his presents with daddy's help of course!

me and Colton- Christmas Day

Chloe, Colton and Kaylee Christmas Eve... hard to get a picture of them!

unwrapping presents

January:  Our family left on pretty early in the morning January 7th.  At about 11:30pm January 7th Colton woke up screaming.. screaming like I have never heard him scream.  I didn't really think anything of it at first just tried feeding him and putting him back to bed.  I fed him and he seemed to settle down and when I laid him down he woke up again crying, so we changed him and fed him so more and tried to lay him down and again he woke up crying.  After doing this over and over again for a little while I thought why isn't he going back to bed.  I figured it was just teething since Colton had been grumpy for a few days before then and seemed to be teething drooling.. a few minutes before 1am after Colton had been crying and crying for about an hour he all of a sudden started projectile vomiting everywhere.  It was a lot, I have never seen with any of my kids any throw up so much, it went about a foot and cover me, the bed and himself with throw up.  I knew something was wrong... Brad felt the back of Colton head, where his soft spot is and it was hard and bulging out a little. I knew, I knew that his shunt had malfunctioned.. And off we went to the hospital, I have never driven so fast the the hospital before.  I know with shunt malfunction that acting quick is important.  Colton throw up again in the car seat on the way to the hospital, in the car seat walking into the hospital, while trying to get his vitals and again when they gave us a room at the ER.  Colton got rushed back and into a CT scan.. then his neurosurgeon came to talk to me and told me that Colton shunt had pulled out of his ventricle and that he needed emergency surgery because his shunt wasn't draining and she could already see his ventricle building up with fluid.  4 hours after we got to the ER Colton was back into surgery.  It was so scary.. something I knew could happen at any time. I knew his shunt could malfunction and was aware of all the signs to look out for. I thank Colton neurosurgeon so much for moving so quickly in getting Colton into surgery.. She has now done 2 life saving brain surgeries on Colton and I am so thankful for her.  Thanks to her my son has a chance at a life and he would never get if it wasn't for his shunt.  It's scary to know that this shunt is keeps my son alive.  Colton got discharged from the hospital the monday evening.  He really struggled with pain the day of surgery and the day after.  It was so hard to see him in so much pain.

fresh out of surgery

a visit from Daddy

poor buddy was in so much pain

finally feeling up to playing a little

This is how I spent most of my weekend.  By Colton side.. I love this little man so much.  He is such a strong little boy and such a little fighter.

The rest on January was quite a battle with tricare to try to get them to cover Colton molding helmet. and we still don't know if that are going to cover it.  Colton shunt is doing very well and draining great and healed up really well.  He now has a programmable shunt that is set at 1.5.

Colton CT scan the night he went into surgery.  His brain has expanded so much!  we are so blessed and just so thankful!! Such a miracle!!

January 31st Colton went in to get fitted for a Molding helmet.  Whether our insurance covers it or not this is something Colton really needs so we are getting it for him.. It will take about 2-3 weeks for it to come in.  Then after he gets it we will need to go in once a week to get him measured and make sure the helmet isn't putting pressure on his shunt.

ready for the casting 

Cast on and trying to dry a little before they take it off

all done.. and he wasn't happy about all this!  Cried the whole time!

February 1st-  Colton had an ophthalmology appointment today.  He got his eyes dilated and they took pictures of his eyes.  He needs glasses now too.  His vision is within normal range for his age but it's on the lower side.  And the pictures of his eyes showed he has Optic Nerve hypoplasia-  his optical nerve is small then the average baby for his age.  Right now his optic nerve is performing at about 60%.  During this appointment his doctor was talking to us about in the NICU when she came in to look at Colton eyes for the first time how they went every direction.... up, down, sideways and just all over the place.  She told us that then she really didn't think Colton would make it long (every doctor thought that) and how she thought Colton wouldn't ever see and look at you and know you are there.  She is very happy with Colton now, he can see and tracks and knows you are there.  HE CAN SEE!  I am just so happy with every thing... Colton is doing amazing!  He is such a little miracle.  PRAISE THE LORD!  All of our prayers work!  Not only is he here and doing well but his is excessed any expectation any doctor had for him!  It was hard today to hear his doctor say she didn't think he would make and and probably never see, but such an amazing feeling to know how far he has come!!

waiting at the eye doctor

Colton you are just amazing and I love you so much.  Thank you God for giving him to us and thank you, thank you, thank you for letting him live and for having him thrive!!!!

Been such a long time since I wrote a post! Colton is 3 months now!

I have been really bad about keeping up this blog but I am going to try to write in it more often!  Colton is now 3 months old!!  It has been a great 3 months with lots of ups and downs but just amazing.  I am so Thankful for every moment I have with little Colton!  So I am just going to look back starting with Colton's end of NICU stay and just some up Colton first 3 months.

Colton was in the NICU for 12 days!  Way shorter then any doctor had told us.  He was doing amazing!  About 2 days after Colton got his brain surgery to put his shunt in, his shunt got clogged and his neurosurgeon went in and had to tap it (put a needle into the "reservoir" part of his shunt and take some fluid it and just flush it)  And after that Colton shunt worked great!  Drained the fluid so well.  His head was at 46cm and got down to 37 1/2cm.  Majority of Colton stay in the NICU was very smooth just working on getting Colton to drink more from his bottle.  His goal was to get 60cc down before the doctors would take out his feeding tube.  At about 10 days old he got his feeding tube out and went home at 12 days old!

In Colton first couple of months he only had a few down moments (we are so thankful)  His shunt was starting to drain a little to well so we had an MRI done which showed that Colton head drain to fast then then caused there to be subdrual fluid on the outside of Colton brain.  But luckily it wasn't putting any pressure of his brain and we would just lay him flat as much as possible to slow down the shunt drainage.  Colton had a follow up CT scan about 2 weeks later and it showed the fluid on the outside to be going down so we continue to just lay him flat as much as possible.  3 weeks later another CT scan showed that they fluid was going down even more!!  And that Colton had more fluff!  Colton Brain matter keeps expand with every CT scan we have!  The doctor's have Colton diagnosis as Semi-lobar HPE and of course the Hydrocephalus.  But with the past CT scan his neurologist said that that diagnosis might not be true and we might not be dealing with HPE at all.  He may have another type of brain malformation.  So we are just going to wait and see how Colton brain expands and figure out his diagnosis later for now we are just going to enjoy and love on him as much as we can!

Colton started to smile at 2 months old and at 2 1/2 months old started to coo!!  And his head control is getting a lot better!  At about 2 months old he was just started to be able to hold is head up a little.  And now at 3 months old Colton can (sometimes)  hold his head up for 2-3 mins at a time while laying on his belly with a little pillow under him.  He is doing so amazing!  We are so proud of him! And we are so unbelievably thankful!  He is such a Miracle and we Thank God everyday for giving him to us!  He is such an amazing boy!!


Colton head when he was over draining:

Sleeping so peacefully 

Colton 2 months old!

Baby first Holiday- Halloween!

Colton 3 months old:

He is such a handsome little boy:

Holding his head up so well (3months old):

He is getting such a personality lately!

precious Colton smiles!

Day of Surgery for Shunt Placement.. and Colton first 2 days.

Day 1-
Colton is doing really well.  He is on a warmer to help keep his temperature up.  The nurses think because his head is so big and there are no hats to fit him that is why he is having a hard time with his temperature.  He nursed for the first time the night after he was born.  All the doctors are so amazed my how well he is doing.  We are so thankful for him!  He is such a strong, amazing, determined little boy!!

Day 2: (day of surgery) August 11, 2011
Colton had his last feed at 3am.  He got wheeled of to surgery at about 7:15am.  Brad went down to stay with him until he left for surgery (brad was there about 6am).  I stayed back at our room because I went down for every feed the night before and ended up bruising right next to my cut from the c-section.  When brad finally made it back to the room and told me he left for surgery I was so nervous and started to tear up.  I knew he was going to go but it just scared me to know my baby boy was about to get brain surgery done.  The doctors told Brad that it would take 2-3 hours for surgery.  It seemed like a long time but Brad reassured me it was normal.  The couple of hours past and I was so nervous the whole time I kept looking at the clock and just wondering how he was doing and how everything was.  I cried a couple of times and just felt so sick to my stomach the whole time... I mean what mom wouldn't feel nervous/anxious if there son was going through what my son was.  After the 3 hour mark Colton still wasn't back from surgery.... now I was really starting to freak... wondering if something went wrong, wondering if Colton was okay.  Finally 4 hours after they wheeled Colton of to surgery the Neurosurgeon came into our room to let us know how it went.  She told us everything went great!  The shunt was in with not a lot of trouble... she did tell us that when she was putting the extra tubing into his belly she tried to put to much in and then how to redo the tubing in the belly (she was just trying to put in as much as possible so when Colton grew he had enough tubing to last a while).  Then the Neurosurgeon told us that Colton was able to come off the Ventilator and was on a little bit of oxygen.  She said he was back in the NICU and that we could visit him.. So after she got done talking to us about what to expect with the shunt we went to the NICU.  When we first walked in and I saw him, I felt so bad for him... His shunt tubing in his head all the way to his belly was really red... and he looked so out of it.  He was hooked up to lots of things and was still on oxygen.  The tubing look really big for him you could basically read the writing on it...  His skin was really stretched from his head being so big that is why we could see the tubing so well.  But we knew this surgery is what he needed so we were thankful he got it and hoping this will help him tons! I was just so thankful that he was okay that he made it through surgery and that he was doing great!!  He is such a strong little boy!  And we are just so blessed to have him for a son!!

Colton starting to get prep for surgery:

Colton getting wheeled down to surgery:

Right After Surgery:

Colton was only on oxygen for a couple of hours and they were able to completely take him off from it and he was breathing just room air!  And the shunt already seems to be draining his head already looks small and he eyes don't seem as pulled back from his head being so big.  Hoping he recovers well from surgery and hoping tomorrow he will start to eat again. Stay Strong Colton James!  And we love you!!