Hardest part about being his mommy....

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!!

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...

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...

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!!

I hope you all have a WONDERFUL day!!
XOXO

Thoughts...

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...

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

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