Gage's Page

Update #2...

2011-01-09T16:06:00.000-08:00

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...

2011-01-09T06:25:00.000-08:00

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...

2010-11-05T07:31:00.000-07:00

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.

2009-01-18T17:47:00.000-08:00

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...

2008-11-13T18:43:00.000-08:00

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...

2008-11-10T18:44:00.001-08:00

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....

2008-09-28T13:20:00.000-07:00

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....

Surgery...

2008-09-09T22:21:00.000-07:00

Gage had his surgery Monday at Children's and all went well.
The Dr. was a bit shocked at the level of his prolapse...at one point she called it "the mother of all..."
Anyhow...because the prolapse was so big it left him with a much bigger hole than he should of had so she had to stitch it up on the inside and the outside.
Poor guy. Nothing is ever easy for him.

Because of the extent they ended up keeping him over night so they could make sure he took his feeds and medicine well. He did GREAT!!

I made sure to stay on top of the nurses with his pain medicine...Gage has such a high tolerance for pain that by the time he's crying and really showing his discomfort it's too late and can take a long time to get him calm again.
I was really pleased that they listened to me on it and for the most part were really good about giving him medicine every 3 hours and aside from a brief moment today he did awesome.
I am so proud of him.
After each surgery or procedure I realize just how strong and what a fighter he is.

We're home now and exhausted so I apologize for the shortness of this...I just wanted to update everyone.

XOXO

Picture post...

2008-09-05T12:15:00.001-07:00

We got these done a couple months ago for my mother in-laws 60th birthday.
Enjoy...

I love this one of Gagey...if you look close you can see Aunt Jenny's hand.

Sweet picture of Gage and his cousin Rinoa.

And my handsome boy.

Heavy heart...

2008-09-04T08:38:00.001-07:00

Hi Everyone...

I just wanted to let you know that Gage is scheduled for surgery on Monday to repair the prolapse. I'm hopeful that they will be able to repair it without having to actually redo it. Yesterday morning he popped out his g-tube for me and when putting a new one in I got to see just how bad the prolapse is. I'm so happy the surgery is in less than a week.

I'm in a bit of a sad mood today...just having a hard time with all the sickness in kids. One family on my myspace list has their 3 year old special needs son in ICU with pneumonia. He spent his birthday their. My heart hurts for this family.

An old friend of mine just had a baby girl a couple of weeks ago and she is in the hospital with a rare heart defect and a lung defect fighting for her life. Again, my heart hurts.

It doesn't make sense. Kids shouldn't haven't to go through things like this. Parent's shouldn't have to see their babies suffer.
But yet it's all around us.

I don't really have much more to add right now...maybe later.
Take care.
Shannon.

Crazy people...

2008-08-09T12:26:00.000-07:00

After reading the latest post over at Holland and Eden's blog I have decided to disable the right click function from this blog...basically this means that no one can save pictures of Gage to their computer.

There's far too many weirdo's out there.

Scary, scary stuff.

Way overdue update...

2008-08-07T21:22:00.000-07:00

Oh my goodness...it has been FOREVER since I've updated!!!

I've felt really guilty about i and was going to use the "I took the summer off" bit as an excuse but the truth is that I went WAY too long and felt a bit overwhelmed and wasn't even sure where to begin on the update.
I am a slacker. lol

I do have a ton to update you all on though and I will start with the house...we moved in finally at the end of June and we're loving it!!
Everything turned out awesome. I have quite a few before and after pictures of the house and I will get them up sooner or later...I figured I'd get this done and then work on a picture post another day.
Anyhow...all the stress (my end) and hard work (everyone's end) was so well worth it. I still find myself waking up and looking around in disbelief that we actually live here. I feel blessed beyond belief.
And yes it is true that we are now (transplanted) cheeseheads. haha

In other news...Gage had a few appointments at Children's last week.

First we saw the eye clinic and while we were there they confirmed what Kris and I suspected...Gage does have CVI (cortical vision impairment)...the basic gist is that he has everything he needs to see but somehow the signals get lost on the way to the brain. The Dr. did say that his eyes react (sluggishly) to light but that seems to be about all he reacts too. The Dr. said that he considers Gage to be blind.

Kris and I have thought this for a long time and hearing it was bittersweet. One one hand we are happy to know for sure because it may change the way therapies are done...and it's just nice to not wonder anymore.
BUT...I'm not going to lie...actually hearing it was a bit hard. Obviously you always hope for the best news.
The not knowing on anything is a blessing and a curse for me but in the end I do feel a bit relieved to know for sure.
I just keep telling myself that this can only work in his favor.

After the eye clinic we met with the surgeon about his prolapse. The nurse was in first and she told us that most of the time a prolapse actually turns out to be granulation tissue and that GI is a bit too quick to give the prolapse diagnosis...I think she was a bit surprised to see his G-tube sight...there is no question that it is indeed a prolapse.

Gage is going to have surgery to have it removed. We're not sure just when yet because Kris needs to clear it with work but we have a few prospective dates for this month or the first week in September.

After the surgeon we saw GI for a checkup. It seems Gage-o has lost just about a kilo and a half since starting the keto diet so we're going to have to up his calorie intake but otherwise the appointment went well.

As for the keto diet...we're not for sure that it's helping but I think our instinct says that it just may be.

I'm still keeping my fingers crossed that this will work for him and that he will be able to come off some of the medicine.

WOO!!

I think I've covered most of the happenings...I know I kind of rushed through each thing but it's late and there was a lot to cover.
If you want me to go more in depth in anything just let me know and I will happy too!!

And on that note I think I'm ready for bed!!
Have a good one!!

P.S. I will try to get up the pictures of the house in the next couple of days (if blogger lets me. lol)

Dr.'s appointment...

2008-06-11T09:31:00.000-07:00

Kris and I took Gage to the neurologist for a follow up on Monday. It was an alright appointment...definitely not the best we've ever had but by no means the worst.

The basic gist of it is this....

We're going to keep Gage on the ketogenic diet for at least 3 more months in hopes that his body will adjust to it and it will start to have positive affect. As of now it hasn't been working and in fact his seizures have been a bit worse but the Dr. didn't seem overly concerned by it.

We have also put Gage back on melatonin at night to help with sleep. It didn't really work very well before but we're going to humor the Dr. and give it another go...if it doesn't work then we're going to try something else.
According to the last EEG Gage is almost never in a normal sleep pattern...he doesn't enter REM state...he more or less naps. This is caused by his seizures and the lack of sleep is actually causing seizures....it's a vicious cycle.
If neither the melatonin or the sedative have much affect then we're going to eventually back off a bit on the felbatol.
As for now we just wait and see.

The biggest area of concern though was Gage's G-tube site. Dr. Z called G-I down to take a look at it because Kris and I (and her) were concerned about the amount of granulation tissue he had accumulated in such a short time....guess what?? It's not granulation this time...it's a prolapse. I'm currently waiting on a call back from Tara (his nurse case manager) for an appointment with the surgeon.
It's always something for my poor baby.

In other (happier) news...the house is just about done!!!!!
Kris and I can't wait for Gage to see his new room!! I will eventually get pictures of the house up on here for you all to see.
His room is just amazing. It's bright and colorful and just plain awesome.

Well time for me to get the kiddo hooked up for another feed.
Until next time...take care.
Shannon

Hardest part about being his mommy....

2008-05-28T20:01:00.000-07:00

For the last couple of days Gage has been a bit whinier than usual...actually him being whiny at all is odd. I haven't been overly concerned with it...just figured he was having an off few days. We all have those...right??
Tonight though was rough....after his bath and his night time feeding I got him all tucked into bed and all was well..for about 15 minutes...and then the crying started.
REAL crying...lots of tears.
HARD crying...the kind where it's hard to catch your breath.

I have no idea what prompted it. I don't know if he was scared or if something hurts. I just have no idea....and that is the hardest part.
I worry all the time that I wouldn't know if something was seriously up with him.
It scares me that I may miss something.

I really, really hate moments like this.

Good luck with that!!

2008-05-28T15:39:00.000-07:00

Yesterday Dependicare (or I like to call them...Dependi-not-care) finally made it to the house with Gage's keto-cal and the super swell delivery guy informed me that he "would need the actual patient to sign for this."

I could barely keep a straight face...I sort of flipped my thumb towards Gage and said "good luck with that."

Come on....seriously??
Seriously???

He could see Gage hooked up to the pump so obviously he knew who the "patient" was...he just wanted to be a jerk I think.

Takes all kinds I suppose.

To my sisters...

2008-05-20T17:59:00.001-07:00

To You, My Sisters (and Brothers!)
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Nothing is ever easy...

2008-05-15T10:58:00.000-07:00

There are times where I find myself so frustrated with things...not Gage...just things. Today is definitely one of those times.
I've been making phone calls all morning to try and find out information on wheelchair ramps as we need one for the house...aside from one place that is out of funding for the year I can't find any place that either helps fund the ramp or covers it altogether. It's ridiculous.
I am just so irritated with the world right now. Not only do Kris and I have the daily "battles" with Gage...seizures, paying for medicine, Dr.'s appts. etc....but we also have the joy of trying to figure out how to pay for things like wheelchair ramps and seats for him inside the house.
How is it that there is only one place that helps with that???
Why is it so easy to get on welfare and food stamps but so damn hard to find help for disabled children?? Where are the priorities??
Families on welfare for the most part have a choice of whether to work or not work and they have the luxury of changing their situation but families with special needs children don't have that choice....we cannot wake up one day and decide that we're going to change our child's situation.

Do you guys realize that I have to sit at home most of the time with Gage because we cannot afford to pay for a wheelchair that I can lift into the car?? The one we have now is great for the school bus but I cannot lift it.
I've accepted that though.
But to find out that it's going to cost thousands of dollars for wheelchair ramp just so my child can get out of the front door??? I WILL NOT ACCEPT THAT.
I CAN'T accept that.

But I don't know what I'm going to do.
I am so beyond frustrated and sad over this.

Why does it all have to be so hard???

Happy Mothers Day!!

2008-05-11T14:16:00.000-07:00

I hope you all have a WONDERFUL day!!
XOXO

Thoughts...

2008-05-09T10:06:00.000-07:00

Lately I've found myself getting caught up in debates on prenatal testing and parents that either chose to abort or chose to keep and it's funny but it seems that people have a harder time understand WHY a parent would want to keep a child that has some sort of "defect" (I don't like describing it like that)...and it's led me to wonder how I would have reacted if I had known before hand about my own Gagey's health.
Would I have kept him??
Would I have decided that I couldn't handle it and opted to abort??
It scares me to think about a life where I had never known Gage.
I don't think I would be half the person I am if I had never had the privilage of being his mommy and I don't think Kris would be either. We've both grown so much in the 6 years since we were blessed with him.
I honestly do think we were chosen to be his mommy and daddy and that there is a reason for it. He was given to us.

I know a lot of people can't understand that way of thinking because when they see a child like him all they see is his disabilities and the work it takes to parent him. They don't always see past that and see what a blessing he is.

But on the flipside...if Kris and I have more children we've both decided to go ahead with prenatal testing. Obviously our hopes are for a healthy child but if the child is not healthy would we be strong enough to parent that child as well??
So much to think about....

Not QUITE what I meant...

2008-05-08T19:32:00.000-07:00

I've found the best way to prepare Gage's new formula is to mix it up the night before and distribute it between 4 baby bottles.
He gets 3 bottles filled to 250ml. and 1 filled to 122ml.
The bottles work perfect because they have the markers on it that I need it and I can dump it easily into his feed bags.

Anyhow...I've had MAJOR baby fever for awhile now. I spend a lot of time thinking about future children and all that goes along with it and tonight it hit me...this is pretty much what I would be doing if I had another baby. Fixing bottles and washing bottles and what have you (at least some of the feeding end of it).
It's not quite what I meant when I said I wanted more children but I suppose this with tide me over.
HAHAHA.
Just had to share that. :)

Ketogenic update

2008-05-08T08:48:00.000-07:00

We're back!!
Gage did fabulous in the hospital. He was such a trooper...even with the finger sticks every 4 hours to check his blood sugar and with the repeated (unsuccessful) tries to get an I.V. started.
It never fails to amaze me just how good natured he is.

Anyhow...we are officially on the Ketogenic Diet and as of last night he was beginning to show signs of being in Ketosis (I have to check his pee twice a day). He is tolerating the new formula VERY well. He is also doing well on his new and VERY strict feeding schedule.
It's kind of a pain just how strict it is. There's precise times for the feeds and for water. I think we'll get used to it but I need to figure out how to get an I.V. pole for his wheelchair so we can still have him out and about and do his feedings.
The mixing of the new formula is a bit of a pain as it has to be exact down to the gram. For example when adding his food it has to be 122 grams....not 122.1....122. It's a bit trickier than you'd think as you're literally pulling out flakes to make it exact.
We also need to change some products we use on Gage...no more fun tasting kid toothpaste for him...he needs to have the regular adult kind but only certain ones. Shampoos, conditioners, lotions, sunscreens, baby wipes, soap (etc.) all contain some carbs. and it's not known just how much leeches into the skin so it's recommended that we switch to ones that contain little to no carbs.
I wonder is all the atkins crazed people from a couple years back knew this. HAHA
If it works though then all this craziness is MORE than worth it.

While we were there they also did a Long Term EEG on him and it showed that his seizure pattern has changed from Myoclonic Seizures to Tonic Seizures.
I kind of always knew it would happen as Tonic Seizures are very common with LGS but there was obviously a bit of hope that the Dr.'s were mistaken and that he doesn't have LGS but it seems that he does so now we just fully accept it and do what we can to treat it.

Otherwise things are pretty much status quo with the Gagester. He really does amaze me with how well he tolerates all the poking and prodding. I'm not sure I could handle a fraction of what he does.

Please keep him in your thoughts that the new diet works at treating his seizures. We probably won't fully know the results for a couple of months.

Until next time :)
XOXO

And so it begins...

2008-04-28T11:10:00.000-07:00

Life has been crazy busy and a bit stressful for the H family.
We closed on the new house last week and have been spending a lot of time over there getting it ready. There's so much to be done. Kris has been over there everyday after work and it's starting to catch up to him I think. He was EXHAUSTED yesterday.

Aside from fixing up the house there's so many phone calls to make. I need to find a new school for him, we need to figure out what to do about getting a wheelchair ramp installed, try to get somewhere with the SSI and medicaid and so much more.
I swear it's endless.
Today I've talked to no less then a dozen people and left as many messages...where did I get??
NOWHERE.
Seriously.
It's frustrating.

And then there's the happs on the Gage-o front...we've had to change his medication from liquid to pill form in preparation to start the Ketogenic Diet next week.
The felbatol is HUGE horse pills and I obviously need to grind them down so I can push it into his G-tube. He needs 1 1/2 of those 3x a day...I'm day one into it and my hands KILL from trying to grind them and that's the easy pill.

The Depakote has a lovely plastic coating on it that doesn't want to grind at all. He needs 2 of those pills 3x a day.
Where as it used to take me 2 minutes to get his medication ready it's now taking me 15 minutes.
I am slightly frustrated that the Depakote doesn't come in another pill without the coating. I worry about his tube getting clogged if a bigger piece happens to get into the syringe.
For the time being I've been grinding the pill and filling it with water and then soaking whatever is left on the coating off of it and then trying to get the medication into the syringe without getting any of the plastic into it.
It's not easy and there has to be a better way but I'm stumped.
If anyone has any suggestions I'm open!!!

My 2 cents...

2008-04-18T19:52:00.000-07:00

Earlier tonight my mom was telling me that the school Gage currently attends is going to be undergoing some big changes in the near future so of course I decide to Google and see what I can find on it...I didn't get too far into my search because I came across this...

DNR for Laremont Student

It was in someone's blog and in further search I found a few more articles on it and also a lot of disdain from the general public on this issue.
Oh and it made me mad...so VERY mad.
My first thought was who are these people to judge the decision Katie's parents have made on her behalf??
Do they live with her??
Do they know what her daily struggles are???
No...of course not.

I cannot imagine being faced with the decision to issue a DNR for Gage and I hope I never have to but in the case that I do the last thing I would want is for it to become a public issue.

I understand that it's relatively groundbreaking for a school to honor a DNR and that there is going to be debate on rather or not the parents are making a judgement based on Katie's best interest or in the interest of themselves...and this is what I believe with my whole heart...

Katie's parents have seen their daughter go through things that parents NEVER should have to see. They have had to make hard decisions her entire life.
They know her limit and they know when enough is enough.
We were not given a handbook when we were handed our special children...there is no guide for what to expect or what's going to happen next or two years down the line.
BUT we do have an intuition and I believe our intuition is maybe a bit better than the average parent. We have to learn to read our kids because they cannot tell us what they think or feel. And because of this I honestly believe that her parent's KNEW (when signing the DNR) that if there was to be anything else done to sustain her life that it would NOT be in HER best interest. It would NOT have a positive impact on her well-being and it may end up causing her to suffer in unimaginable ways.
So because they love their daughter with all of their heart they made what they feel is the best decision. And it is probably going to be the hardest and most painful decision of their lives.

I've met Katie a couple of times because she was in Gage's class his first year at Laremont and I also saw Katie and her mom interact with each other and I can say this with the utmost certainty....she LOVES her daughter and every choice she has and will make for her is based on that love.

I know that most people don't have direct contact with children like our Gage or their Katie and so I can't really blame the lack of understanding BUT I do hope you guys at least will remember what I've written the next time you hear about a parent making a hard choice for their Gage or Katie.

Until next time...be well.

P.S. I realize this article was written in the Chicago Tribune in Dec. but I just had to throw in my 2 cents after reading the publics response to it.

To add...I just read through 119 comments on this here...DNR
the majority of the comments are absurd...completely lacking tact and a lot of them are spent debating whether or not she should even be in school and one even spoke about what a waste it is to educate children like ours (I'm FUMING over this one.)
so if you can stomach it go for it.

Silly Boy....

2008-04-11T14:02:00.001-07:00

Gage was having such a SILLY day!!
What a FUN photoshoot :)

We have a date...

2008-04-09T10:43:00.000-07:00

I found out yesterday the Gage and I will be checking into the hospital on May 5th to begin the Ketogenic Diet and to do the long term EEG monitoring.

I am actually really excited about this...I'm hesitant to say that I have a good feeling about it because we've been let down so much in the past...but I do. For reason's unknown to me I really think that this may just work for him.

Maybe I'm holding onto that because I want it so badly. I want him to NOT be in the bracket of kids who will never have control of their seizures. This is the last step before deciding on brain surgery...and I do not want that....so I'm going to hold onto to the hope that this works. I am going to beg and pray that this will be the trick.
Medicine has not worked, the VNS didn't work...this has to...right??

Anyhow..I got the call from the hospital about 5 minutes after I got the call that the inspection on the new house went well and that we are officially closing on April 21st.
So it was good news all around yesterday.

A new house, a new treatment for Gage...I think that things may FINALLY be looking up for my family.

That's all for now guys.
Take care :)

Movin' on up....

2008-04-01T11:52:00.000-07:00

so I suppose I should do a bit of an update since there is A LOT going on.

First and foremost...we are moving. yeup...my little family and I are going to be moving out of state. Sounds kind of scary right??
nah.
Out of state is actually only 5 minutes away. lol
We need to get out of this state for the kiddo.
Il. currently ranks 47 out of the 50 states as far as helping the special needs population. His Dr. and our lawyer both told us to run, run, run to Wi.
So we are.
And soon.

My parent's offered to help us out and Kris and I decided to take them up on that offer...we found a house last week and put in an offer on it and they accepted it. Our tentative closing date is april 29...two days after my birthday.
We will use the month of May to get the house ready...cleaning, painting, re-doing a couple of the bedroom floors and then if all goes well move into it in June as soon as the kiddo is done with school.

I am so stoked about this...for a lot of reasons.
The first and foremost is the opportunities this will give Gage. He will finally receive the help and support he needs...he will be eligible for equipment and therapies outside of school.
I've already been in contact with a couple of people and they are all waiting on stand-by to help us and him as soon as our address changes.
You couldn't PAY illinois to help us. sad.

But I won't dwell on that and instead I will look forward to what he will now have.

I am also excited about this because we will have ROOM. No longer will we be cramped in a tiny duplex. We will be in a HOUSE. A house with 3 bedrooms on the main floor and a 4th in the finished basement.
No longer will we have 5 kitchen cabinets...we will now have more than we know what to do with.

And to be honest it will just be nice to have our own place.

I do feel a bit overwhelmed by all of this. We have alot to do...packing 6 years worth of stuff, getting the new house ready and then moving in. Once that's done we will come back here and get this place ready for Kris' parent's to sell it.
I also need to find out what Gage's new school will be like.
The one downside is the new school district does not have a school like we have here. I will miss this school more than I can say. It was the one bright spot in Gage's life. The teachers and therapists are amazing. They care about all of the students so much.

Ok...there is still more to update on the kiddo but my fingers hurt.
Next update will be on the Ketogenic Diet.

Until then...have a good one.

Mini-update time...

2008-03-25T19:48:00.000-07:00

Hello all!!

We had a WONDERFUL Easter!! My parent's had us, my little brother, my older sister and her hubbie and their 2 kiddo's and my in-laws for dinner.
My mom really out did herself this year...I can't remember the last time I enjoyed a meal so much. Everything was wonderful!!!
Mr. Gage was in semi-shutdown mode during the day...I think he was a bit overstimulated because as soon as it quieted down he came alive. It was quite cute.
Oh...and the Easter bunny was very good to us!!

In other news...we saw Gage's neuro. on his birthday and she is ready to get going on the ketogenic diet so sometime next month we will be checking into the hospital.
The initial keto. hospitalization is about 3 days and she wants to do a couple other things while we're there so we'll be in for at least 4.

Kris and I have it worked out that I will stay there with lil' man and he will work as normal...we really can't afford for him to take off of work...but unlike last time where Kris came up to the hospital everyday after work we decided that aside from the first day he probably won't come up. The hospital is about an hour away and Kris' job is unpredictable hour-wise and last time it really wore him out to work a full day and then drive back and forth to the hospital each night.
So Gage is stuck with just mama.
I think we'll manage just fine.
Downside is that there's no wi-fi in the room so I may try and talk Kris into keeping the blog updated for those 4 or so days....think he can handle it???
Or MOM...maybe you want to do it???
If not I could put you on Starbucks duty. haha

There is more to update on but because we have no real concrete answers yet I'm going to hold off until we do.

Aside from that Gage is on Spring Break this week and Kris has been working crazy, long hours.

I think after Gage's break is over I'm going to need a break!!!

And on that note I hope everyone had a great Easter.
Until next time.

Happy Easter

2008-03-22T23:53:00.001-07:00

Just a quick note to wish you and your families a wonderful Easter.
This is a great time to remember just how blessed we all are.

Love, Kris, Shannon, Gage and Captain.

Yes, No???

2008-03-19T11:42:00.000-07:00

I've spent the last hour trying to get Gage's Page JUST RIGHT...I'm still not sure I really like the way it looks but it's going to have to do for now.
I wanted to add a picture to the side of it but once again blogger is being a brat and not letting me. Oh well. Maybe that's my cue that I need to stop working on this for now and maybe come back to it a bit later and look at it with fresh eyes and see what I think then.

In the mean time please, please, please comment on your thoughts on the looks of this. Something just seems off to me and I'm not sure what it is...so friendly readers...let me know what you think!!

And once again yes...I know I owe you an update and I am working on it but there's quite a bit to update so as soon as I get it done I will post it.

ETA...if you look to the right you'll see links to other amazing kiddo's and their families. I really encourage you to check them out.
Mom...that means you too!! Just click on a name and it'll bring you to the blog of your choice. You've heard me talk about some of these kids enough.

Cross posted from myspace...

2008-03-16T20:43:00.000-07:00

I know I owe everyone an update but for now I have this....
Current mood: happy
Category: Life

It never ceases to amaze me just how up and down life can be. Just when you think things will never look up and that’ll you’ll never get a break...you do.

Or at least that’s been the case for me.

In the last 6 years I’ve had some real big wakeup calls...life has not really treated us fair in some ways...watching the things Gage goes through has been enough to rock us to our very core. Seeing the bills we have stacked up and knowing there’s not a whole lot of chance of us being able to pay them anytime soon can be very depressing.

There have been days...especially lately...where it’s all seemed too much. I really didn’t know how much more I could handle without losing my mind. I tried to keep a positive outlook but it was getting harder and harder...my life was beginning to resemble a nightmare but I decided to just keep going...I had made it this far.
WE had made it this far.
For better or for worse I had my little family and that was enough.

And you know what?? As soon as I started to REALLY believe that things started looking up for us.

So...no matter how hard life can be or how badly you want to lay down and give up...don’t.
Your life will never become more than you can handle.
My friend Terra said this to me tonight..."When you open your energy up to good things, good things happen."
That is the absolute truth.

I lose sight of that alot.

Cold, Cold Weather...

2008-02-20T18:46:00.000-08:00

Well Gage went back to school yesterday...according to the note Ms. Debbie sent home he was awake for a few minutes and then slept the rest of the day.
Good thing they don't give detentions for that at his school. haha

I had a feeling it was going to be a sleepy day. He had a sour look on his face the whole time I was getting him ready and he was so uncooperative when I was trying to get him into his chair.
That's usually a sure sign he isn't quite ready to be awake yet.

Well luck was on his side today...I woke up about 6:30 this morning and it just LOOKED cold outside so I called Kris and sure enough it was FREEZING. Needless to stay Gage got another day off. I think he was pretty happy about it as he woke up all smiles. Silly little guy.

He stayed in his happy mood for the majority of the day...lots of smiles and sitting up and the occasional burst of laughter. I LOVE days like today.

In other news...Kris is sick. He sounds and looks MISERABLE. I feel for him. He has tomorrow off of work so at least he'll be out of the cold for the most part.

We're meeting with the lawyer tomorrow about the SSI and Medicaid...hence the reason Kris is off of work.
I'm really hoping this meeting goes well and we hear some good news.

I will definitely update on how it went at some point in time this week.
:-)

Wish us luck...

2008-02-18T12:40:00.000-08:00

After (almost) a month off of school I think it's time for Gage to go back.
We've had a bout of the flu, some cold like symptoms, the ever present choking, a couple snow days and a week of freezing temperatures....but finally things seem to be looking up.

The weather is a bit...well not as cold, the snow is still here but the roads are better (minus the whole salt shortage), the flu is long gone and I don't see any signs of a cold.
As for the choking...well that's pretty much here to stay for the time being so hopefully the school can handle it.

I will say it's been nice to wake up leisurely and not have to do the whole mad rush in the morning but I know he's missed school and his friends and of course Ms. Debbie...and I of course have missed those couple of hours all to myself. There really is no need for Dunkin' Donuts in the AM as I've gotten used to just making my own coffee and having a piece of toast but I think tomorrow I may just go there anyways...for old times sake you know?? HAHA

Other than that not much else to report...we have some appointments lined up for next month...on his birthday (poor kid).

Until next time be well...

They're just toys...right???

2008-02-07T11:00:00.000-08:00

I've been trying to get rid of some of Gage's toys for some time now. It's so hard though.
Every toy I pick up makes me sad.
I can remember the day we got EVERY SINGLE toy.
I can remember sitting there imaging him playing with it. I couldn't wait for the day.
I remember when we got the little basketball hoop for him...in my mind I saw him first sitting there playing with the balls...trying to figure out how to put them through the hoop. And then I saw him a bit bigger and standing next to daddy while they both played with it.
I remember getting the peek-a-blocks and how excited I was for him to discover them.
I couldn't wait for him to figure out that there was something INSIDE the blocks.
Again...I had it all mapped out in my mind.

Sadly it didn't quite happen that way.

The basketball hoop sat in the corner untouched for months and months.
The peek-a-blocks remained untouched in a box.

And those are just a couple of the toys.

For a long time I left all of Gage's toys spread throughout the house...I think in some strange way it made me feel more like a mommy. It made it easier to pretend things would be ok too.

Eventually I put them all away in a toy box in his room. Having them in a toy box made it easier to pretend as well.

In the beginning I would look at them every once in awhile and some days I'd drag out a couple and try playing with them with Gage...never went over very well.

It's been well over 4 years since I packed them all up into his toy box and sadly I know he will never play with them...I also know it's taking up alot of space that we could use for other things.

I know this.

But I just can't bring myself to get rid of them.
I can't do it.

Why not though???
They're just toys...right???

In a way yes...they are JUST toys...but they are also so much more than that.
They were my hopes for Gage.
My dreams unrealized.

What a week...and it's only TUESDAY...

2008-02-05T08:55:00.000-08:00

This week started off with a bang.

Yesterday Gage managed to get himself wrapped up in his cords while he was feeding and as I trying to untangle him his mickey button popped out.

I don't change it...I never have. It makes me ill to even think about it so Kris has always done it. Yesterday it was just lil' man and me at home when it happened and I know that it has to be replaced in a timely matter so as not to close up.

I freaked out for about 10 seconds and then I grabbed the phone and called Kris so he could walk me through it. I've seen him do it enough times that I know how it's done but I also wanted to make sure I didn't miss a step.
Usually Gage is pretty calm when Kris changes it but I think he knew mommy was scared so he decided to kick and bang and move and try to sit up...didn't help at all.
I got it in but when I went to draw back on the syringe nothing was coming back up so I didn't get it in right.
I decided at that point that it was in enough that it wouldn't close up so I wrapped him in an ace bandage so it wouldn't pop out again and left it for Kris.

and then I cried. alot.

When Kris got home he was able to get it in properly but it took him a couple of tries...normally he can get it in right away so it wasn't just me.

I felt a tiny bit better.

Until today...when I went into his bedroom to get him up this morning there was something blocking the door preventing me from opening it up all the way...GAGE.
He somehow managed to kick his side rail open and HE FELL OUT OF BED.
My heart just about stopped.
I made sure he was ok...and he was and is. He actually seems a bit smug about it (that's my boy. lol).
He kicks his side rail all night long so I never really think twice when I hear loud banging from his room.

Anyhow...I gave him tons of hugs and asked him to please not scare mommy like that again.

and then I cried. alot

Seems to be the theme of the week....mommy is an emotional wreck.
Nice.

Is it Friday yet???

Long time no update...

2008-01-02T20:52:00.000-08:00

and for that i apologize.

It's been a busy holiday season and things are finally getting back to "normal" so I figured I'd take a moment to update.
We saw the GI specialist last month and Gage's weight went down a bit (YAY) so now he's on a maintain feeding protocol. He was also given a medication called Reglan to help with the nightly vomiting. It seems to be helping somewhat. His Dr. is also referring us to an ENT to see about Botox in his salivary glands to help with choking. That scares me ALOT. And he wants us to see Rehab. Tech at Children's about botox in his legs to help with the tightening.
Man...this botox craze is getting a bit out of hand!!!
Baby botox??
Who woulda thought.
Maybe I can get a voucher to use in a couple years for myself.
HAHA

In other news...Santa was good to Gagey this year....The Gramma's were better but hey...either way he got SPOILED.
He deserves it though.

As for me...I came down with pneumonia on Christmas night. That was a shocker.
Luckily my parent's were able to take Gage for a few nights to prevent him from getting it and to also give me a chance to rest.
Pneumonia is the one thing we've always been scared to death of the kiddo getting.
It could be devastating for him...but so far he seems ok.
Thank god.

And on that note....I wish you all a Happy New Year.
May it be a BLESSED one for all of us.

p.s. I had a FABULOUS picture of Gage to put up but blogger is being a BRAT and not letting me.

One thankful mommy!!!!

2007-11-23T08:14:00.000-08:00

I couldn't have asked for a better Thanksgiving. Gage started smiling up a storm around noon yesterday and didn't stop until close to 9pm.
Unheard of!!!
It was so nice to see.
He also had NO seizures at all yesterday and was awake the entire day. Again...unheard of.
I am the happiest, most thankful mom there is.

We had an amazing time at Kris' parents yesterday. There was 8 of us for dinner and Kris' mom did a GREAT job with the meal. Everything was wonderful.
All in all a fabulous day!!!!
Kris' dad took pictures of our grinning, goofy kiddo and as soon as I get them I'll post them for you all to see.
Hope you all had a great day too!!

Wills and other thoughts...

2007-11-19T19:09:00.001-08:00

Tonight I was watching Jon and Kate plus 8...you know the couple with twins and sextuplets??? Anyhow...they had a guy come over and work on making a will with them and when they were talking to the guy about the people they chose to raise the kid's they said their reasoning was that they were the only people who would agree to take all 8 children without splitting them up. The mom then made a remark about them being the only ones crazy enough to do it.
It got me thinking...eventually Kris and I are going to need to work on a will but who would want to take our son??? To us he's wonderful and perfect and charming but does anyone else see that?? Is there anyone who sees past all the medicine and tubes and developmental delays and wheelchair and yada yada yada to see what an amazing child he is???
One of my greatest fears is Gage being left alone in this world and spending his life in a home. If there is anything I can do to prevent that I will...but how do you go about asking someone to take on a responsibility like this???
I know my parents and Kris' parents will do whatever they can but face it...they're all getting up there in age and truth be told we will probably be around longer than they will.
So how do we do this??? How do we "pick" someone without being an imposition????

In other news...Gage missed school today. He threw up his breakfast about 20 minutes before the bus was to come. Fun.
He also has the rest of the week off.
The good news is we can sleep in a bit longer than normal...the bad news is mommy is stuck in the house all week long while daddy is at work.
No bagels or latte's for me.
This is definitely one of the harder parts of being Gage's mom...i can't just pick up and go when I want.
Oh well...less than a week until he goes back and I can get my yummy bagel.
Can hardly wait.

A blog as THERAPY??

2007-11-18T12:12:00.001-08:00

In the short time since I've created this little blog I've come to realize that I have been holding a hell of a lot inside. Anytime people would ask me how I deal with all of this I'd always give the answer of "I don't know any different" OR "I just do it...you deal with what you have" and blah blah blah. Seemed like good answers to give...right???
Good answers for who??
The people who asked them....or ME???
Seems maybe I did for me more than anyone else. You see...in giving answers like that I could convince myself that that was how I felt.

Buuuuut....here's the truth....alot of time this REALLY fucking sucks.
I mean...think about it...who would want this???
Noone.
And if you say to yourself that you would...then you're a bigger liar then I.
Obviously it's not all bad of course...few things in life are...but instead of glossing over the truth when people ask me things like how I do it maybe I should just be honest.

This blog has also made me realize that I spent FAR too much money on therapy and that this serves me better then they did...and it's FREE.
sweet.

Lord knows nothing else in my life is.

Purpose of this blog today...hmmmm...I suppose there really is none.
But hey...this is MY blog and it can be as deep and meaningful or not as I want it to be.
So there.

colds and other fun...

2007-11-14T11:33:00.000-08:00

I know I said that I would finish Gage's story but to be honest I found it a bit too draining at the moment. I would start and stop and then start again....it's alot harder then it seems reliving all those days and moments that to be honest I DON'T want to relive. I love my child with all of my being but those days were some of the most painful, hard and guilt inducing days of my life. Does this mean I won't ever finish his story??
No way. I will finish it ONE day....just not today.

Anyhow...it seems that winter is upon us. Great.
I know most people aren't fans of winter because of the cold and snow and icky slush but for me and Kris winter brings out the worst for Gage. He seems to have a new cold every month or so and each one lasts just a bit longer and seems to take more and more out of him. He has a hard time bouncing back from each cold and I hold my breath each time that he will come back from it. He's already some colds this year...thankfully none too bad. I think if he was a healthy, "normal" child they may not have been colds at all but just brief bouts of the sniffles. His "brief" bout lasted almost 2 weeks and caused him to miss his Halloween party at the school and Trick or Treating with mommy and daddy. It's sad to think about all of the things he and us as a family miss out on...I try not to dwell on it too much but some days I can't help but think "how unfair."
I'm not one too sugar-coat things with Gagey...sometimes things absolutely suck. Do I love him any less on those days???
Absolutely not. If anything...I love him and appreciate him more because he just keeps on chugging along. Those days when I'm ready to throw in the towel I look at him and know that as hard as it is for Kris and I it has to be 10x as hard for lil' man and it helps to put things back into perspective.
But there are days when I am angry...so angry. Not at Gage of course...just at the world in general. It seems unfair and screwed up on those days that my child is sick and that there are parents out there that don't appreciate their happy, healthy children. But then I wonder if Gage was healthy would I be one of those parents?? Would I be someone who took their child's smile and laugh for granted???
I think to some extent all parents do because until you're in a situation like this you never know what you're missing.

This blog kind of took on a life of it's own today. I guess I had things on my mind that I didn't know about until I started typing. Someone sent me a message today about this blog and it being self healing in a way and I think she was absolutely right. It feels good to get these things out.

Pt. 3

2007-10-11T18:50:00.000-07:00

Now that we had the date for surgery scheduled we decided to have an early birthday party for Gage. We were told that because of the choking that it was almost certain that Gage would become non-oral once the g-tube was in. I think knowing that was what made the decision so hard. I couldn't fathom the idea of everyone sitting down for Thanksgiving or Christmas dinners and my child not being able to enjoy the food. It seemed beyond unfair. I was really starting to wonder how much more we could take. But we went ahead with it....and it ended up being a good move. Gage put on much needed weight and started to look healthier. As hard as the decision was I'm glad we made the choice to do it.

Once that was done we went ahead with trying to control his seizures. His neuro. played around with dosages...adjusted his VNS settings....but nothing was helping. It was around this time that the Dr. thought Gage had moved into Lennox Gastaut Syndrome We were devastated. Out of all of the different seizure disorders this was the one nearly impossible to treat.

Around this time Gage's neuro. moved from Chicago to Milwaukee and being that we're pretty much smack dab in the middle of the two cities we followed. It seemed we had come full circle. The very first neuro. we ever saw back when he was just a couple months old was in the very same clinic that his Dr. had moved to.
Because of the LGS diagnosis his Dr. revamped his medication and decided to put him on the combination of Valproic Acid, Felbatol and Clonozapam. The side effects of all of these drugs sucked. Gage was losing the ability to do anything. Therapies were pretty much done at this point because he was 3 and that's the age when Early Intervention stops. Not that the therapies ever really did any good.

The realization that Gage would never be normal was completely set in. The picture I once had of watching my son play baseball was gone and in it's place was vision's of me pushing a wheelchair. It hit Kris even harder in that aspect. I know how much he was looking forward to doing all the father son things. We were really discouraged but we had to keep going. What choice did we have??? None of this was fair or right or made sense. This was not how parenthood was supposed to be. I mean you hear about kiddo's like Gage but you never for one second think that could ever be you. At least I never did.

I know this part is short but I'm going to finish up the rest of the story next time...

pt. 2

2007-10-09T16:42:00.000-07:00

Sadly Gage didn't remain seizure free...in fact his seizures returned with a vengeance. He started having multiple seizures daily and they were lasting longer and longer each time. His Dr. started him on topamax and kept the keppra.
The topamax was a NIGHTMARE. Our once happy and giggly baby was replaced with a ZOMBIE. Even when he was awake he wasn't really there. Therapy appointments were becoming a disaster. All he wanted to do was sleep.
At this point Gage lost the ability to sit up unassisted alone completely.
It was horrible to witness this.
He used to be the best sitter. He would sit and play with toys and just look around for what seemed like days...suddenly he couldn't. My heart was broken...but I held onto the hope that we'd still get these seizures under control and that my boy would be back.

This year was spent trying all different combinations of medication. We'd think we'd find one that was starting to do the trick but his stubborn seizures always found a way to prove us wrong. His seizures were increasing almost daily it seemed.

Kris and I were really losing hope fast.

The Dr. suggested that maybe Gage was a candidate for a Vagus Nerve Stimulator. Kris and I started researching this like mad.
It wasn't a sure thing but we were more than ready to try it out. Surely this would work....we were all past due for a break.
After meeting with the people from the company we set up the appointment for surgery for Febuary of 2004....a little more than a month before his second birthday.
We were scared to death about the surgery itself but were pretty hopeful that this would help out.
After the surgery we spent months going back and forth to the hospital for adjustments on the stimulator...but sadly we saw very little improvement.

Back to trying medication combinations it seemed. We were slowly running out of options with the medication so the Dr. decided to try the old tried and true Phenobarbital. He was still on others at this point as well....sadly I can't remember the exact combinations....we went through so many. Some he was on for only a month or two...others quite a bit longer.
We tried the phenobarb. for quite awhile and still saw no improvement. He was sedated a lot of the time from the combination of medication and also from the seizures themselves.
At this point we hadn't heard him laugh in quite awhile.

After more months went by with still no improvement the Dr. decided it was time to bring him in for another long term EEG and he also wanted to rapidly detox him from some of his meds. and try Lamictal and Dilantin. Unfortunately the Dr. tried those two at the same time and Gage broke out in rash. They were discontinued because he was allergic to at least one of them...we still don't know if it was both or just one but the Dr. felt it was safer to not try either again.
We left with no answers...just continued to try more meds. and different combos...praying one would work.

It was getting harder and harder to feed Gage. He was sleeping so much of the time...somedays we were lucky if he was awake enough for a jar of baby food and a couple of bottles. Yes...at more than 2 years of age he was still on babyfood and bottles....he didn't have the strength or ability to chew really well and couldn't figure out sippy cups. He also couldn't feed himself or hold a bottle....it was like having a 6 month old.

We force fed him as much as possible in hopes of building his strength and his weight up. He was becoming such a skinny little thing.

I believe it was January of 05' when the Dr. wanted him back in the hospital for another EEG and also a swallow study. We were all starting to concerned over his eating (or not eating). The EEG as usual was a mess. Seizure pattern was almost constant.
His swallow study also came back showing that Gage was silently aspirating on thin liquids. The Dr. said it was a wonder that he had never had aspiration pneumonia.
We were given thickener to try out in his bottles to see if that would help. They also recommended that we have a G-tube placed and also a nissen fundoplication done as soon as possible.
I was not so sure. I told them i wanted to try out the thickener for a month or so and see how that worked. That was major surgery after all...I needed to do some more research.
That hospitalization was one of the hardest yet. Kris and I were emotionally spent and our hope that this would all turn out ok was quickly diminishing.

I did have hope though that the G-tube and nissen wouldn't be necessary.
That hope didn't last too long though.

Gage continued losing weight and was now obviously choking on medication, food and liquids...even with the thickener.
We scheduled the surgery for March 4, 2005...Daddy's birthday.

It was one of the hardest decisions I've had to make to date.

to be continued......

Gage's Story....pt. 1

2007-10-08T16:27:00.000-07:00

I think this is going to end up being more than one part as it's probably going to be a bit long...
Also I'm going by memory on alot of this and it was more than 5 years ago so somethings are a bit hazy...like order of meds. and such.
so here goes...

Gage was born at 12:47am on March 13, 2002 almost 2 months early. He had a bit of a rough start but all in all was a perfectly healthy baby. Kris and I were able to take him home with us...not bad for a preemie.
For the first couple months everything was great. He was thriving in almost every way...he ate like a champ and was getting to be a big guy. The only area of concern was his head size. The pediatrician was concerned that Gage's sutures had already closed so off we went to Children's in Milwaukee for an MRI. Everything came back ok he just had a little head....according to the neurologist I did as well. lol

We breathed a sigh of relief. We felt like we had dodged a bullet. That happiness was a bit short lived though because at one of his checkups the pediatrician was worried that he was developmentally delayed and thought we should have him evaluated by Early Intervention.
Kris and I were a bit discouraged about this but knew that as a preemie it was always a possibility.
We met with a caseworker and she started getting everything in order for the therapists to come out and do an evaluation.
Gage was about 9 months at this point and was due back to the pediatrician for his shots...these would turn out to be his last shots ever.

Not long after I started noticing REALLY odd behavior. Gage would smile in the oddest way. It was almost like he was seeing something noone else did. It was eerie but at the same time it was actually kind of sweet. My mother in-law used to say he was smiling at the angels and we didn't really think too much of it.
The next thing I started to notice as off were his eyes. They would flicker a bit back and forth...but it was quick...never lasting more than a few seconds and it wasn't often that he did it. Again I didn't think too much of it.
Why would I???
He was happy...eating well and just generally a healthy baby. Looking back I think I knew something wasn't right but at that time I didn't want to believe that something could be wrong with my kiddo.

One day though it became too much to ignore. I remember this day like it was yesterday...Gage and I were hanging out on the floor playing with toys when he started his eerie smile...this time his whole body froze. Instinctively I KNEW something was up. He was sitting up and a pillow was behind him so I gently pushed on his shoulder to see if he would snap out of it.
He didn't.
He fell back onto the pillow and never moved a limb.

I freaked out and called the ped. right away and they agreed to see him the next morning. In the mean time I watched him to see if it would happen again. It didn't.
At the appt. the next day the Dr. thought that it sounded like seizures and had us go for an EEG the following day. Gage did awesome for the EEG and the initial findings did show seizures but they weren't able to give us a full report until it was reviewed. We were assured that our Dr. would call that night with a game plan and we were sent home.

That day Gage had the first of two Grand Mal Seizures.
I have never been so scared in all of my life. I was immediately on the phone with the Dr. I refused to be put on hold and just kept screaming to get the Dr. on the phone. Finally I talked to him and he had already recieved the report and said it was just Epilepsy (just epilepsy. lol) and put him on Tegretol.
Kris and I were upset of course but also a bit relieved. Kris' dad and sister both had epilepsy and they were ok. Surely our son would be too.

In the midst of all of this EI finally came out and evaluated him. Sure enough he was developmentally behind enough to qualify for services but the therapist's felt that by 2 he'd be more than caught up.
A bit discouraging but we were ok with the news.
We were already learning to take things in stride.

After a month or so on the Tegretol it became apparent that it wasn't working. Gage was still having episodes (thankfully no more Grand mals though) and they were getting more frequent. He was also starting to do odd things with his arms...he would tense up really quickly and then release. Repeating this multiple times during the episodes.
Being as I had a computer and Google at my fingertips I started to do some major research. I read about something called Infantile Spasms (west syndrome) and it sounded SO much like what Gagey was doing.
I talked to his ped. and he agreed that we should see a pediatric neurologist because he felt this was becoming something he couldn't treat.

On March 13, 2003 (his very first birthday) we saw the new neuro. for the first time. During the initial appointment I mentioned what I had read on Infantile Spasms and asked if this could possibly be what was going on with Gage. He assured us that it was nothing more than epilepsy and that we should try new medicine and that it was definitely not IS.
He put Gage on Trileptal and said that he thought that one should do the trick.
We left there feeling pretty good and went home to celebrate our baby boys first birthday.

After a short time Gage was still not doing better and the seizures were picking up almost daily. He was starting to sleep alot and his therapy appointments were getting cut short. The scariest part is he was also regressing. He was losing his ability to sit up unassisted for long periods of time....it seemed to wear him out really quick.

Back to the neuro. we went. Once again I brought up IS but it was once again shot down. He thought that maybe by adding another medication we'd see some improvement. I believe at this time it was Keppra that was added.
Another month or so went by and still he was getting worse.
His therapist's were getting concerned. He wasn't able to sit and play much at all.
We saw the neuro. one more time and he adjusted the medication a bit.

During this time my mom had been trying to get us to go for a second opinion. Finally I agreed that it was time.
We made an appointment in Chicago with a neurologist that was a leading expert in childhood seizure disorders.

Upon examining Gage and seeing him have a seizure his initial though was Infantile Spasms.
I almost lost it.
Isn't that what I had been thinking all along?????
The Dr. wanted to admit us into the hospital that day to do a long term EEG study to confirm what he (and I ) thought.

Sure enough Gage had Infantile Spasms.
I felt like the worst mother alive.
I felt like i should have fought the first Dr. harder on this.
I felt like i had let my baby down.
I still have a hard time with this.

Because it was IS it had to be treated differently with soemthing called ACTH...a steroid injection. We were taught how to give him the shots. That was so hard. Noone wants to inject their child with anything.
The Dr. told us that we could possibly be past the point where it would fully work but that it was worth a shot.

The ACTH was something we had to give him for 6 weeks....we saw improvement right away. For those 6 weeks and quite a few after that Gage was seizure free.
Kris and I were ecstatic!!
We thought surely he was going to be ok.

That was not to be the case though.....

to be continued...when i get feeling back in my fingers. lol

1st post...

2007-10-06T16:28:00.000-07:00

I've been wanting to start a blog for my son for some time now but kept putting it off...I am a HUGE procrastinator. I've been keeping family and friends up to date with the going's on through my myspace blog but I think the time has come to keep Gage and Myspace separate. It doesn't really look too good to have picture's of mommy drinking a beer with the girl's and then blogs of the kiddo....sooo...Gage's Page is born.

Sweeeeet!!!

I suppose an intro. of sorts is needed...I am Shannon and I'm married to Kris. We have an amazing 5 year old little boy. He has Lennox-Gastaut Syndrome and a host of other disabilities/issues. He's my little fighter.
Kris and I also have a crazy kitten (Captain Spaulding)...but this blog is for Gage. lol
Although I'm sure Captain will make his way in here from time to time.
And that's my little family.

This is just a basic first post to get the blog started.
Next up will be Gage's story....