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9.29.2011

PRESCHOOL ASSESSMENT 2.

For Cole's birthday, he got to go to 3 1/2 hours therapy and assessments...he was NOT to happy about that! Cole had his 2nd preschool assessment...he qualified for ALL of the services they offer...physical therapy, occupational therapy, speech therapy & visual therapy.  He also has yet ANOTHER diagnosis, Cortical Visual Impairment (thanks Ashley) the eye's are HEALTHY, but the connection that sends info to the brain is not working.  I mentioned that he started watching books on his ipad...but can't seem to watch a movie on it...and he can't watch the TV.  This is their example of what happens...Elvis is on stage, there's lights & music and it catches our attention...well, the kids who have "this" can't process that and NEED to look away. But, they were VERY excited Cole already had an ipad because they use them in therapy for this diagnosis.  So, he gets to use his ipad AS MUCH AS HE WANTS!!!  (he grabbed it off the table by his self today!).

In addition  to what the school district is offering him (each therapy is about 30 min/week)...so he is obviously going to need more.  We are doing PT, OT & SP privately through a hospital.  We are also doing 6 sessions (2 hours each session) in October at an extensive rehab place...it will be about $2000 for the 6 sessions (nope, no insurance help).  Yes, it is VERY expensive...but we have to do this while he is fresh from his "S's"!!!  If we feel like this has helped...and he needs more...we MIGHT do the 3 week course: 4/hrs day & 5 days a week...that is $6000!!! We will need to do some bake sales just for that!   But, this is the only place that has the neuro-suit and some other stuff "normal therapy" doesn't offer.  We took a tour and were pretty excited to start it! Cole's friend, Bertrand went for a tour...Bertrand is in a wheelchair...they had him FREESTANDING on his knees in 30min...this is incredible for Bertrand...we hope lots of good things will happen for Bertrand!!!
(yesterday Cole did A LOT of FIRSTS....YES FIRSTS!!!)
He jumped on the couch for the 1st time!
 He played with a ball for the SECOND TIME!!!
He figured out how to lift his leg up!
He found his TOES for the FIRST TIME!
He climbed on the couch since his surgery.
He was so excited he got up ALL by his self!
 His head is healing quite nicely!
oh...today he climbed over my leg because it was in the way!!!

9.28.2011

BIRTHDAY BOY.

3 years ago we were delighted to deliver this beautiful, healthy baby boy!
We feel in love with this little baby! 
He was thriving... 
...and SO happy!!! 
Life was SO much fun...filled with family vacations...instead of trips to the hospital.
 (this was a week before Cole's little world turned up side down)
The next 2 years for Cole was filled with 5 MRI's, 5 EEG's, 1 MEGscan, 2 PETscan's, 2 CATscans, 4 genetic tests, 20+ IV's,  4 seizure meds, 1 yucky medical diet, 200,000+ seizures, Physical Therapy, Occupational Therapy, Speech Therapy, hospital visits & blood work...and last but not least...1 brain surgery.  I can't believe how much this little boy has gone through!  I hope this next year will be an amazing one for Cole and that his little brain will be able to work the way he needs it too!

(Cole's 1st Birthday)

9.26.2011

NOAH CUPP.

 Remember *this*  post when we met Cole's friend, Noah in the hospital?  This is the little boy who is 1 year older then Cole.  He had the SAME lobes removed that Cole did...CRAZY that we were able to meet this family and they were our neighbors (once again...I know it was by the hand of the Lord that we met them!).  Anyways, I wanted to share this post from his mom, Terri....it's an amazing story...I've been reading it over and over and over!

 "An awesome story I wanted to share about Noah.  Last night at dinner he was wiggling around and unable to focus...as usual!...on the task at hand.  Uncle Jeff was over and helping him eat.  Out of the clear blue Noah said "Angels lay down with me".  You have to know Noah to appreciate that he put together 5 words to make a sentence first of all! and second he does not play "pretend".  A skill we have not acquired yet.  So Jeff and I looked at each other like "did he just say that?" Then he said again..."Angels lay down".  So when I asked him if the angels nap and sleep with him he said "uh huh".  "In your bed?"..."no! on the floor"! " What color is the angel?"..."blue".  "Do the angels play games?"..."no!...play trains".  To make this even better, about a month ago Noah and David were out on an errand and passing a familiar spot when  Noah said "Daddy, where Angel?" We've passed this spot before and he's said something similar and we always dismissed it.  This time David asked "Do you see angels?"..."yep".  "What color is the angel?".."blue".  "Does the angel have a name?"..."It God!"  So remembering this past conversation has just illuminated our life.  As mom, I have struggled to be more at peace.  Thank you God for telling me that our little man is being watched over and not alone!  Children are closer to God than any of us. What a tremendous blessing.  I know it is the prayers of all of you that is allowing us this intimacy with the Lord.  Thank you!!"

We are so glad we got to meet you Cupp Family!  We are praying for Noah...and of course the two of you as well!  

9.22.2011

IPAD.

We bought Cole his an ipad during tax season (6 months ago)...they have amazing aps for children with autism or developmental delays and aps to help children communicate. I was pretty skeptical of getting it just because Cole had no interest in anything (not even toys)...but the other mothers who have kids like Cole had wonderful experiences with the ipad. So, we decided it was a small price to pay compared to the $8,000 communication devices. Well, the ipad went UNTOUCHED till last week! I found these "auto read" children's book apps on sale for .99 so I bought it in hopes to get his attention...and it worked! He watched 3 of them for 15min straight! Before his surgery, we couldn't even get him to look in the direction of the ipad....or the T.V. for that matter. Yesterday, Cole saw the ipad on the couch...reached for it...so I helped him & turned it on & played the book....he laughed and was so excited (of course I was beaming ear to ear that he was interested in SOMETHING!) then he made eye contact (real eye contact!) and smiled at me SO BIG! It was the craziest thing to have an experience like that. These are the little miracles I've been DREAMING about! gosh I love that little boy. 
1st day.
2nd day.
oh, doesn't that melt your heart!

9.20.2011

PRESCHOOL ASSESSMENT.

Cole has been in an Early Intervention group called "Kids on the Move"...he has 3 different therapist who come to the house every month.  They started coming a month after he started seizing (since he was 11 months old).  We LOVE his therapist...they are so good with Cole!  But, since Cole is turning 3 this month, he gets transitioned from Kids on the Move to a preschool thru the School District.  He had his assessment for preschool today...we filled out a lot of paper work and answered a lot of questions.   Then, they score him (50% being average & 100% being above average).  Cole scored 1%...which was around what I had expected...and even though I fully expected it...my heart breaks.  I can't stop crying about it.  It's so frustrating for any parent...wanting the whole world for your child....then being told that they are just barley hanging on by 1%.  But, really...that 1% doesn't mean anything to me...because the little things that Cole WILL accomplish will mean the world to us...and we give him 100%!

9.18.2011

THANK YOU DR VISIT.

When we took Cole to get his stitches out at the pediatricians...I think he got more then he bargained for.  Yesterday he started with a runny nose, then a cough, then a fever.  Poor guy!  He's already trying to heal from his surgery and now he is sick.  Daddy slept in the twin bed in Cole's room that we put up temporarily...but it looks like it will be up for good!  Cole slept in my bed & did pretty good as long as he was sleeping on me.  Yes, my back hurts and I've got a headache now....but, it's worth it if Cole is comfortable. 

9.16.2011

STITCHES & MEDS.

Cole got his stitches out today (his head is still pretty swollen).  He did so good, there was 4 of us holding him down, including the nurses, so daddy got to pull all 37 stitches out.  Also had an apt w/the neuro here...yes, we got in early!  We also got a call from Luchhwani's office, we are starting the wean for one of his seizure meds today (he will stay on the other for a few years...unless he starts having "S's" we will put him back on the 2nd med).  He is down to 500mg/day and his last dose will be in 2 weeks...let's pray there will be NO "S's" with the wean (this is the MOST expensive med I've ever known...probably more then an average house hold income is a month).  He's been a little lethargic today and rocks back & forth and puts EVERYTHING in his mouth.  He hasn't been looking directly into our eyes today...just toward our face.  I would say he is acting a little strange...but I can't pin-point it.  I can only suspect it is the Vigabatrin wean...but he just started sleeping through the night a few days ago (thank goodness) so maybe it could be his body catching up to it's self...or he hasn't had pain meds today.  I don't know what it is...but we will be watching closely.  I even watch him while he's sleeping (thanks Katie for letting me borrow your video monitor...these things are the BEST!). 

9.14.2011

DAY 14 (POST OP).

Oh gosh!  I can't believe it's been 2 weeks since Cole's surgery!  It feels like it's been one LONG dream for the last 2 years.  We were looking at Cole's baby book today and daddy reminded me that this was the *FIRST* time that he's ever looked at Cole's baby book.  It's been too hard for him (previous to the surgery) for him to look at pictures of Cole before his seizures started.  Cole was doing things at 8 months old that he isn't doing now...it's really mind boggling to remember the things he used to do.  But, we are excited for  Cole's future and that his brain has FINALLY had a break. He's NEVER gone with out a seizure for more then a few minutes...even when we couldn't see him having a seizure he had activity ALL THE TIME.  The last 2 weeks have been a HUGE accomplishment in his life and can't wait to see what life brings for him.  ...of course with a lot of therapy and help!   Cole has been doing good today, we even decreased the pain meds..all though I think he has insomnia...he's slept a total of 8 hours the past 3 days...and yes, that means that is all I've slept!  We were so tired, that yesterday we went shopping at Costco to finally have food in the house...and we total forgot it in the car all night long...so we had to throw everything away...and we all know going to Costco is never a cheap shopping trip.  This was one of the days I wish it was snowing :) 
But, this picture made me feel so much better today...look HOW CUTE THIS LITTLE BOY IS!!! I caught him smiling and watching the dog.

9.13.2011

OUR FLIGHT STORY.

Our flight from Cleveland to home was AMAZING...everything was running SO smooth (especially for us flying back home 2 hours after Cole got released from the hospital).  We flew Southwest and they have a per-board for people with disabilities (which is AWESOME!!) so we were the 1st ones on & off the plane...and more room for Cole so he doesn't freak out!
Cole was SO happy and didn't cry once...the stewardess were SO helpful and made sure we had everything we needed and even helped us load our stuff on to the plane.
We couldn't believe how smooth our flight was...until Cole had FINALLY pooped (not just an ordinary #2...but one after much constipation from all of the pain meds etc.), the day before he had a few suppositories, miralax, prune juice etc....and of course he chooses to go on the plane!  Daddy took Cole into the *tiny* bathroom to change him...Cole is a BIG & TALL kid, so daddy put him sideways on the changing table.  I was sitting in my seat and Adam pops out of the bathroom telling me he needed help!  I went to help him and Cole's #2 was EVERYWHERE...on the celing, walls, changing table, sink, on daddy, all over Cole....I mean EVERYWHERE!!!  The light won't go on until the door is shut, so the stewardess shut both of us in the bathroom...we couldn't even do shoulder to shoulder, the ONLY thing I could do was *LAUGH*, I was laughing so hard that I was *CRYING*...we were SO squished with Cole kicking and his #2 everywhere that I had to grab him (still covered with #2 & no diaper on) and stand in the isle.  We were at the front of the plane of course, where everyone could see us. Cole's legs were kicking & covered with #2 while daddy tried to strap a diaper to him...finally I was able to put him back in his seat, clean him off & the stewardess helped us get our luggage down with clothing and bags to throw everything in while Daddy cleaning the bathroom up.  We finally were settled and clean...the stewardess came back over and asked us if we were old enough to drink & if we were, she would get us a drink because she thought we could use one!  We don't drink, so we declined...but VERY nice of her to ask!  After we finally landed, a guy behind us told us we "are the BEST parents ever  and to continue to take good care of the little guy".  All of the passengers were so nice and were interested in Cole's story...probably not the smell though!

9.12.2011

DAY 12 (POST OP).

First , we wanted to Thank everyone for being so kind and visiting us, offering to help with Cole & bringing us treats and dinner! It really means SO much to us :)  Sierra & Darcey brought Cole balloons & cookies...Cole loved the cookies...he doesn't get sweets very often.
Cole was feeling better today...it came and went in waves.
He was in a VERY good mood tonight & couldn't stop laughing...again.
Since Cole has lost his Right Peripheral vision, he's been running into everything...so daddy put more padding around the house.
I almost forgot to post the picture of our favorite nurse, Karmica. We had her the first and second time we were at the Clinic. She is SO funny & we love her! She brought a crib in for Cole with a bubble on top so he couldn't fall out and it looked like he was in jail...so she sung Cole a "rap song" about being in jail! She gave us hugs before we left.
Luke, the little boy who was Cole's next door neighbor, who also had surgery gave Cole an Elmo balloon & stickers...so cute!!! They used to live 45 min from us...and no, we never knew them!

ARE YOU KIDDING ME??

So, we are back home and the doctors in Cleveland wanted Cole to go for a follow-up to his neurologist here at home...so I called this morning...he is completely book until 2012!!!  I can't even make an apt for next year.  This is ridiculous that I can get a "next day" apt with the BEST doctors in the country, but can't see his neurologist here till next year.  Good thing we don't really need anything from them!  Cole will probably get his 6 month follow back in Cleveland before we can get in to see  his neuro here. 

9.11.2011

DAY 11 (POST OP).

So yesterday Cole did awesome...he didn't cry once....he was so good and so happy...even with us taking him on an 8 hour plane trip.  Today is another story...I don't get how he can have such a good day and the next day he is a complete wreck.  He has cried since he woke up at 6am this morning.  Ashley, Terri, David or Kristen (the parents of a child that had brain surgery) please give me some advice!!! I know I would be acting like Cole also, if I just had brain sugary...but all the drs and people who experienced this said children bounce back really  fast.  When we were in the hospital, 2 kids had brain surgery 1 week AFTER Cole did...they were in the hospital for 3 days (both got released before Cole).  I was ready for the surgery...but was NOT ready for the after math that the surgery would bring.  I really thought he would recover well...the drs thought he would to...and boy we were ALL surprised.  Uhhh, I just want to cry as much as Cole is crying.  Don't get me wrong, I am really pleased with the results of the surgery and extremely glad the Cole had this opportunity but I can't help my emotions of watching Cole suffer for so long! It seems like we finally get a break and the next day is awful.

9.10.2011

DAY 10 (POST OP).

Oh, it's been a long day...we came home!!!  They weren't sure if they should let us check out of the hospital yet because Cole was crabby this morning.  But after talking to them, there wasn't anything they could do for him that we couldn't.  They wanted us to stay in Cleveland for a few days before leaving, which we were going to do, but we decided that it would be best for Cole if we just went home so he could be in the comfort of his own home...and we were having issues w/ the rehab situation.  Turns out the decision was right...we check out and flew home...he hasn't cried a single tear or fussed at all...in fact he can't stop smiling.  We look at him and he will smile!  He even gave us kisses on the plane (which he hasn't done since he learned how back in July) and keeps clapping...which he's never really done.  He also has used his right hand to put food in his mouth!  I've got a great plane story...but I'll have to post it tomorrow.  We are going to bed...oh, its so good to be home!!!  P.S. Katie...your amazing...thanks for the delicious cupcakes (you know me well!!!) and letting me borrow your video monitor & thermometer!

9.09.2011

DAY 9 (POST OP).

When we got here...we thought Cole would have to be in the hospital for 10 days, but the day before surgery they said it's usually 10 days if kids aren't doing very well...but typically it is 2 days in PICU & 2 days in the monitoring  if they are doing good.  Cole was in the PICU for 4 days & so far 5 days in the monitoring unit...so that kinda tells you how he's doing.   Drs were thinking we could get out today...but they came to check on him this morning and he wasn't doing good.  So, we are staying another day (we can get out of here if Cole has 1 good day...but they want us to stay in town for a few days after to make sure Cole is ok).  After lunch Cole started to feel better....this is the dr he keeps flirting with...it was so funny, he wanted to get out of daddy's arms to go to her.  She came to check on him later in the day and he was smiling & smurking.  I said to Cole "are you flirting" and he smiled even more at her...so I had to get a picture of his first "crush"! 
 We were SO excited Cole was feeling better...we had high hopes of getting out on Saturday.
 WRONG!!!  Later tonight...this happend....
 ...and this happend (his head is so swollen), which is typical...but the drs are worried that he's had such a hard recovery.  Believe it or not...this cute little boy that is 3 years old next door to us had surgery 2 days ago and you would never know he had surgery...he will be going home before Cole and had surgery 1 week before him.
 We are having issues deciding where to do therapy...problem is the dr wanted Cole to do "in-patient" rehab because he isn't walking very well. But the therapist who came said he doesn't have a breathing tube and most kids are when they do "in-patient".  So she was going to work with the insurance to do "out-patient" therapy at the Shaker campus (which is an amazing therapy program) it would be Monday-Friday 8 hours a day....but we have to get pre-approval and she can't submit the papers till Monday, then we have to wait for the insurance to say if they approve it....which won't happen till tue or wed.  So, we would end up having to waste 2 or 3 of our days.  Then she said they would help us find an out-patient where we live, but then we have to figure out what would be just as good for him and aggressive.  The Shaker campus rehab is specifically for children who just had epilepsy surgery...so it would make sense to do it there.  uuuhh!
Thanks Tiff for sending me these beautiful flowers!!! It was a nice surprise :)

9.08.2011

DAY 8 (POST OP).

Wow!  What a wild ride, if you didn't read today's post earlier...we woke up to the nurses saying the surgeon ordered a CATscan "Stat"...because of his chronic crying all night long (literally ALL night, except for 2 hours).  The surgeon came to talk to us, he said Cole's CT was clean!  They don't know why he is having such a hard time with pain...all though he was VERY constipated from all of the meds.  We tried EVERYTHING a few times, he finally went a little bit and is feeling better...once again I kept telling them that I thought his stomach hurt...and I was right. 
The surgeon also told us they biopsied his malformed lobes/brain tissue they took out, to find out if this was genetic (if we passed this on to him or if it was a fluke)...it was NOT genetic!  He said they don't know why this happens...my advice for women of child barring age...even if you aren't "trying" to get pregnant...make sure you take folic acid.  I only took it 1 month before...I don't know if my body just needs more folic acid, but if you do have a child with brain or spinal issues they usually give you extremely high doses of folic acid (usually 10 times the normal amount) before you even start trying to conceive.  I would never want this to happen to anyone else and they don't know if this is the reason...but learn from me and take your folic acid!  I can tell you...you will never stop wondering if something could have been prevented (if by chance something ever happens).
The other attending dr told us what we thought were absent "S's" are NOT episodes!  We are very relieved today as we had been sitting on pins and needles.  We are exhausted...all of us finally got to take a nap today after the dust settled...we all woke up feeling like a train had hit us.  I can't even tell you how long we slept for.  We woke up at 7pm...Daddy went to go get food....came back a little while later empty handed and said "did you know it's 7 at night, not 7 in the morning!!!" & I said "yeah".  Oh, we also got a few smiles from today!  The dr won't let us leave till he has another good day and also wants us to stay in Cleveland at least for the weekend.

9.07.2011

DAY 7 (POST OP).

  Cole had a visit from Dinah, the therapy dog...he didn't care or even notice.
Can I tell you how much I LOVE Cole's neurologist (Dr. Lachhwani).  He is the nicest, most genuine doctor ever!  He called the nurses today to check up on Cole.  Later today, he came in to visit us.  He wanted to know how we were holding up...he sat down with us for a bit because he TRULY wanted to know how WE were feeling.  I think he knew from the nurses that Cole has had a rough week...and in turn, knew that we were not doing the best.  I told him we we stressed out, he reassured us that we were doing our best and to keep having positive thoughts and talked to us about Cole's possible Absent "S's"  He wanted to know what he could do to help us.   Then he picked Cole up to comfort him because he was freaking out as usual. 
He wins "The Best Neurologist Award" in my book.
This is what I mean by "freaking out"!...
He has beaten his own nose & scratched it up...
and uses his arm bandage to keep cutting it open.
He clawed his chest to pieces (it looks worse in person)...
But, when he is asleep...he looks like an angel.
When Cole is asleep...we don't make a move....because he is a CRAZY MAN when he is awake. That is why we can't leave the hospital because they are trying to get his pain under control. Oh...and don't worry...remember the post of Day 4 (IV issues because Cole kicked out 2 IV's and we had 20 people tying to get an IV in him), well we FINALLY got an IV in him that night...they called a 3rd anesthesiologist from home to come put one in Cole. But, the next day he kicked that out also. So, we had to wheel him down for a 4th IV and have a 4th anesthesiologist put another IV in him. She remembered Cole last time we were her. Then another nurse remembered him from the OR...then 5 other nurses remembered Cole from February & June. One of the dr said "I think everyone knows Cole now...he's famous!"...and I was thinking...yeah, he's probably famous for being the Incredible Hulk and kicking out 3 IV's and having 22 people try to get IV's in him...I am pretty sure his IV's are going to cost A LOT OF MONEY! 
We will know more about Cole EEG tomorrow...if you didn't read about the EEG earlier today here is the update: We aren't sure if Cole is having absent "S's".  He keeps looking at the ceiling and doing funny/repetitive things with his tongue.  He is also awake and NOT crying for once...which is kinda weird.  They look different then the absent seizures he had before the surgery...we are praying they are not.  They are hooking him up to the EEG today. 

9.06.2011

DAY 6 (POST OP).

Meet Dr. Bingaman.
When I found out about Cleveland Clinic, I was going through the pictures and profiles of the drs I wanted Cole to see. Dr. Bingaman caught my eye immediately. For some reason I was drawn to him...I saw his face and knew he could help us. I felt like I owed this man my life and didn't know why. Well, I looked at his profile and saw that he was a Neurosurgeon. I was looking for a neurologist...my heart sank because I didn't know how I could have such strong feelings just by looking at a picture of someone I've never met. But, I did find an amazing neurologist (whom I love & also owe my life to since he found Cole's malformation...Dr. Deepak Luchhwani). Anyways, little did I know that the feelings I had for this dr were real....and it confirmed my thoughts and feelings after finding out that Little John (Cole's friend) also had Dr. Bingaman as his neurosurgeon (which was a successful surgery!)...and his amazing mom reassuring me of how much she trusted Dr. Bingaman. Everything fit so well and I had NO hesitation that Cole was in the BEST of hands. As we had our conference with Dr. Bingaman minutes before I handed Cole's life over to him, he reassured me that he would take good care of him...I KNEW I didn't have to worry. In fact, while we waited for the 6 hours of surgery, I was at peace. I can't explain it, but I wasn't scared or nervous or even very emotional. It was probably the best feeling I had, knowing that my little boy had his whole future in front of him now. And I am SURE it was also your prayers...definitely couldn't have done it with out YOU. 
My sweet dear friend, Kami and her family sent this beautiful & fun bouquet of flowers, aren't they cute!  Thanks Kami, we needed something bright in our room :) 
We made Cole walk today...yes, MADE.  I feel like he's an infant again...no sleep, trying to figure out what he needs and why he's crying.  Trying to figure out if he's hungry, tired, hurting etc.  Getting him to sit up is really hard and getting him to walk is even harder.  He will have to re-learn everything.  I thought it could happen, but I wasn't really preparing my self that he wouldn't...so here's to another challenge. 
So far, Cole's surgery has been a success!  I am a little superstitious...and haven't said the "S" word since before his surgery.   Actually, I did say it once today to the surgeon, I told him I haven't seen any...he said that is GOOD...but it is a better sign if he doesn't have one for the next 6 years.   So, with that said...I am being superstitious!