Update #2...

Gage's fever is back. This is what could potentially keep him from coming home. The nurse gave him some tylenol so now we just wait to see if it's going to work.

He also lost his last IV...it infiltrated and caused his hand and arm to swell up quite a bit. His Neurologist ( Dr. Z) had happened to stop by and she had wanted to call up transport to get another line going but thankfully the nurse was able to talk her out of it and it was agreed that if he needs rescue meds then it will be given in another way.
Starting IV's and drawing blood is really traumatic for him.

Other then the fever and the IV everything is going well. I guess now we just wait and see.
Wait wait wait.

Update...finally...

I apologize for the delay in this.

Gage's surgery on Thursday went well. It took a bit longer then they first thought because the Anesthesiologist was having a hard time getting the lines in. Once they finally did things went very well. The hospital was pretty good about keeping us informed which was great...sitting in a waiting room and not knowing what is going on with your child is soo hard.

There were some interesting cats in the waiting room with us...I wanted to line a few of them up and do a quick smack down.

Anyhow...once Gage was transferred up to ICU things got a bit hairy for a short time. Kris and I explained to every single person we saw that morning that it was important to stay ahead of the pain control. Gage has a HIGH pain tolerance...it's ridiculous how high it is...once he's in pain though it's almost impossible to get it under control.
We told this to every nurse we saw, the Neuro. surgeon, both Anesthesiologists...EVERYONE. Did anyone listen??
Nope.
We got up to the room and poor Gage was a wreck.
He had so many tubes and a drain in his head and he was hurting and confused and SO upset. It broke my heart and really upset us that no one listened to us.
It took 2 doses of Morphine to get him calm.
I felt bad for the ICU nurse as it was not her fault at all and she had to deal with two very angry parents...she was amazing about it though. Very patient and understanding and went right to work figuring out how best to get him calm again.
Thanks Monica!!

Gage had a CT scan later that afternoon to make sure there was no fluid on the brain and aside from the craziness of getting him hooked and unhooked from all of the tubes it went well. The scan was clear.

Gage was pretty agitated the first night but they gave him a medication that helped calm him down. Kris stayed with him and I went home to be with Ellie.

The agitation stayed with him for all of the second day. Kris apparently spent the day by his bed trying to keep him from pulling out the lines.
Kris had another great nurse...this time a friend of my brother's. Hi Ginna!
He said she did really well and stayed on top of things with Gage. We really appreciate that.
Gage had an MRI done that day to make sure the Corpus Callosotomy was complete...it is :)

Around 10pm the second night Gage was transferred out of ICU and onto EMU. This was both good and bad...it was good that he was doing so well that he was able to be transferred but bad because the awesome care was gone and he was no longer able to get the medication for his agitation (it's only given on the ICU because the patient needs to be monitored so closely).

The 3rd day things got a bit hectic. Gage started to run a pretty good fever and was also an itchy mess from all of the morphine. Benadryl and tylenol were started and he was pulled off the morphine. By this point his pain was pretty well controlled with IV Ibuprofen.
The fever has been up and down but is hovering right around 99.1-99.5. His Neurologist isn't too concerned. She threw around some big, scary words as for the cause of it but isn't worried. Kris and I are just making sure the tylenol is given regularly.
This has been a little bit difficult as weekend nursing on EMU is a bit...lacking. They've been very nice but a bit...complacent.
We've got it handled though.

I think that's where we are now. Kris went home to be with Ellie last night and I've been here.
That's been one of the hardest parts of this...we both feel so torn. BOTH kids need us and we want to be with BOTH of them.
We're getting through ok though...we've got lots of help :)

I apologize if this update is a bit all over the place...I am very tired right now.

ETA: UPDATE...His temperature is finally normal!!!!!

Update...

Hello and welcome back.
I have taken such a long, long break with this blog that I thought about scrapping it altogether and (possibly) starting a new one sometime down the line but for now I'm just going to update here.

I don't think I'm going to go through everything that has gone on in the past 2 years because I'm just going to go ahead and assume that if you actually read this then you probably already know...so let's just go ahead with what's going on now...

Gage just got out of the hospital yesterday. He was in for EEG monitoring so his Neuro. could see what's going on with his seizure patterns. Daddy stayed up there with him and I stayed home with the little lady since her and I both have colds.
That was hard. I am always with him during hospital stays. I missed him terribly but I know Kris was just as good an advocate (maybe even better...he stresses less) as me.

The results of the stay are this...we are going forward with the Corpus Callosotomy.
The plan is to meet with the surgeon as soon as we can and get this ball rolling. His Dr. also wants to place Leeds directly on his brain following the surgery to see if we can pinpoint a direct region of seizure activity...if we can then the plan is to resect that portion of his brain.

Kris and I feel pretty ok with this plan.

We trust his Dr. and know that she is doing what is necessary.
His Dr. is wonderful...we adore her and couldn't be happier with her.
His Dr. is also leaving the practice.

Yeah.

She is moving to California to set up there. Great timing.
We will be switching over Gage's care back to his previous Neuro.
We loved him and he was great with kids and it was an unfortunate set of circumstances that led us to a new Dr. in the first place.
Thankfully he practices in the same location so none of that will change.

There is more to update but I think I'm going to stop for now. I'm still letting everything sink in myself.

Love to you all.

update...finally.

My mom reminded me today that I haven't been doing a very good job updating this and for that I apologize...time has just gotten away from me.

Anyhow...we all had a good Christmas. As usual Gage made out well...lots and lots of new clothes and a new bookcase for his room. Daddy and I had given him his gift early but Santa brought him some new fleece blankets and flannel sheets and some other odds and end.
I spent Christmas day sick and in bed at my moms but everyone else had a very good day. It's always nice to spend time with family...especially when you have such a good one.

Gage is doing very well at school this year. I love his teacher...she is so sweet and so good with him and I just get a very good feeling from her. I fully believe that she loves what she does and that she loves her students...how can you not though??

I guess the biggest news with us right now is Gage's upcoming neurology appointment. The ketogenic diet is not working and I think the consensus is that it's time to consider doing the corpus callosotomy. Kris is 100% on board with this and I am becoming a bit more comfortable...I'm not going to lie I do have some reservations...but I think that's probably normal.
I do know that we are running out of options as far as seizure control goes. We've been through all of the medications and he's had the VNS in since 2004...the keto was pretty much our last option before we talked about surgery.
Gage's neuro. raised his keto. from 3:1 to 4:1 in November in hopes that it would help...it hasn't. Our appointment is in a couple of weeks and from there we will schedule the surgery.
I pray that this works for him.

He is due for a break...we all are.

I think that is all for now...I'm sure I could find more to say but I think I want to publish this now before I get busy and let another 2 months go by.

I hope you are all well.

Childrite...

We got Gage's Christmas present in the mail today!!! After reading another blog and seeing their daughter in the childrite seat I immediately started reading the testimonials on it and knew we had to get it for Gage.
It's pretty much a glorified Bumbo ...a much pricier Bumbo but everything labeled "special needs" or "adaptive" comes with a hefty price tag...we all know that...but we said forget it and ordered it anyway.
I am sooo happy we did!!
We couldn't wait until Christmas to give it to him...why would we?? It's something that can benefit him and make him more comfortable TODAY...so today it was.

He did incredible in it!! I actually could have cried seeing him sitting up...he looked so proud and so content.

I totally recommend it to anyone with a special needs child that needs a bit of help sitting up.
Best investment ever.

I have pictures of him in it but I can't seem to locate my cord...I'm wondering if the cat has wondered off with it. HaHa

So Sweet...

Jenny from and she's rambling again nominated me for this. What a sweetheart!!!
She is getting married in May and she's started her blog to document it all (wish I had done that. lol)...I LOVE her blog...she's so cute and funny and she sometimes posts really yummy recipes that I can't wait to try.
I actually went to high school with her fiance and I couldn't be happier for the two of them!!
Thanks Jenny!!

Here are the rules for this...

The Uber (AKA Super) Amazing Blog Award is a blog award given to sites who:
-Inspire you
-Make you smile and laugh
-Or maybe gives amazing information
-A great read
-Has an amazing design
-And any other reason you can think of that makes them uber amazing!

The rules of the award are:
-Put the logo on your blog or post
-Nominate a minimum of 5 blogs
-Let them know they received this award by commenting on their blog
-Share the love and link to this post and the person you received your award from

so the 5 blogs I nominate are...

Lily's mom...she is such an amazing mom and her daughter is just awesome. One of my favorite blogs!!! And she is the reason I started this blog..I stumbled upon her first blog that she kept for Lily and I was hooked and inspired and I can't thank her enough for it.
4 x the fun...this mom is HILARIOUS!! She does updates daily and her blog is what I read every morning with my coffee.
Holland and Eden's mom...LOVE, LOVE, LOVE this blog!! Billie is such a great mom and her daughter's are sure to make you smile.
Tall Oaks from Little Acorns Grow a newer blog to me that I really enjoy reading...she has two sons that are so cute and I really like her writing style.
Sweetened*taters...this momma has identical triplet girls...who btw are BEYOND adorable...her blog is honest and funny and another one I check each day with my morning coffee.

These 5 blogs are only a very small amount of the bloggo's I have bookmarked. I am a self admitted blog-a-holic. I'm not big into the gossip blogs but I sure do love to read the real one's about real people and real families....not saying famous people aren't real but you know what I mean.

Anyhow...I really recommend checking all of them out...all 6 of them.

Jenny~ thank again for thinking of me and my blog. You are such a sweetheart.

Next up...an update. I promise.
There has been a lot plus I am really excited to talk about what we're doing for Gage for Christmas...for the first time I really feel good about what he's getting.

Seizures, seizures, and more seizures....

Well Gage has been on the ketogenic diet long enough that if it was going to work I think we'd know it by now...sadly I don't think it's going to do it.

In the beginning I was hopeful but if anything his seizures have worsened. I don't think it's the diet causing them to worsen...I think it's just the progress of the syndrome. I don't really know if he's having more of them but they have definitely changed and seem to be a lot harder on him. He's actually had moments where he just cries and cries afterwards.
It's so heartbreaking.

I want to talk to Dr. Z about trying lamictal again. We tried it once along with the dilantin but one of them caused him to breakout in a rash...we don't know which one it was though...and I'd like to try the lamictal by itself and see how it goes. Hopefully they'd check him into the hospital if they agreed to try it so if he did have a reaction to it we could quickly get it taken care of.

I just don't think the felbatol/depakote combination is working anymore and I'm ready to move on and try something new.

Have any of you had any luck with lamictal??? I'm also curious about vigabatrine...I've heard it mentioned quite a bit in another blog but it's my understanding that it's not sold in the US.

Anyhow...Gage still hasn't started school yet...the ramp in just about complete though so I'm thinking possibly next week. I'm just hoping this school works out. I'm not going to lie...I have some reservations about it.
His last school was just so wonderful and I'm really doubting that I'm going to be as comfortable with him at the new one.

We shall see though....