Friday, December 10, 2010


I lost it today.  It was a subtle loss.  No one noticed, I think.  No one shared in the grieving process with me.  I am only sharing here because I feel it has to be said. 

I think of motherhood as an exquisite experience not for the faint of heart.  Everyday my children are on a journey.  We may only move several inches towards our destination, but at the end of the day, we sleep with our hearts full.  We accomplished the today.  Today, my heart is heavy. 

Matthew has not been sleeping.  He may have his night/day mixed up.  He may want to play in the middle of the night.  His seizures may be wiping him out causing a longer than normal midday nap.  None the less, our sweet boy is not a sleeper. 

This morning was the annual ECI Christmas party.  We have never been able to make it to one of these events due to sickness, doctors, etc.  So, today we went.  My sweet friend was gracious to let us tag along with her, and I was excited about an adult conversation this morning.  Matthew, however, had other plans.

He woke up a bit early.  He seemed to be in a good mood up until it was time to eat.  Then all bets were off.  He screamed.  SCREAMED!  For hours.  We gave him a suppository this morning, hoping that would ease some tummy pain he has been having.  It did the job.  It also resulted in projectile diarrhea all over my pants.  Luckily it was before we left, so I was able to change.  Nothing like smelling like poo in public!

He cried his gut wrenching cry all the way to the party.

Take a vivid journey with me on the party.

I have my two children in a dirty double stroller.  Yep, forgot to wash it before this morning.  My sweet girl apparently did not want to wear her socks.  She threw them somewhere in the car only to be discovered later when returning home.  Matthew refused to do anything but be held.  I sat in the back of the room holding both children, covered in drool and humbled.

I don't accept help well.  I chose this life.  We were blessed with these children.  I don't feel sorry for myself.  Today was no different.  I kept it together through my arm that had gone numb and my pants that were falling down.  I know its too glamorous.  We made it out alive and fully dress, aside from the missing socks. 

My friend and I, being brave or naive, decided to stop at the mall.  Here I am again with my dirty double stroller and my sockless daughter.  We did well for a whole two minutes.  Matthew needed comfort.  He needed to be on his belly.  He needed to be home. 

Here is where I lost it.  He screamed and screamed. Three little old ladies in a store had to come and check on him.  They wanted to make sure he did not need medical attention.  Yep, totally serious.  One young girl asked me if it was normal that he screamed in his sleep.  FYI~he wasn't sleeping.  Because the majority of his vision is in his lower left field, he generally looks as if his eyes are closed in public.  I get the "aww he's sleeping" statement a lot!

I wanted to run out of there.  I did not need pity.  I needed an extra hand.  I needed a gentle encouragement.  Pity does not look good on me.  It clashes with my eyes, and I have made my peace with that. 

But on the way home, I began to feel as sorry for myself as the four mall ladies.  Maybe I was not strong enough to venture out into public.  Maybe I was a sad vision for people to see in public.  I saw the stares while we were eating.  The public doesn't understand Matthew.  They also can not stop staring at Autumn's feet.  Apparently, pity takes over, and they can no longer look me in the eye. 

Matthew screamed all the way home.  He finally fell asleep on the couch, on his belly, in his home.  My head, however, has been racing.  I cannot allow other people's opinions of my children or our life affect us.  Our kid's deserve so much better. 

They deserve a mom who will take them to the annual ECI party without socks and a dirty stroller because she wants them to see Santa. 

So beware:  Do not feel sorry for my special children.  They have so much ability despite their disabilities. 

And I will no longer be attending any pity parties!

Wednesday, December 8, 2010


Update blog!!!

I am not really sure where to begin, so here goes~~~

Matthew and Keto~~

We are not seeing any seizure control at all!  As of the 23rd of this month we will have been doing Keto for four months.  We have seen massive amounts of cognitive gain, which we are truly excited about.  His seizures have also been changing.  Pre-Keto he would have about twenty seizures a day lasting approximately 5-10 seconds.  As of now, we are averaging fifty seizures a day, and they last approximately 15-90 seconds!  They are also presenting with much more aggression.  Pre-Keto many people would not even notice his seizures.  As of now, they are very very apparent.  He uses his whole boy when he seizures.  However, he is a trooper, and the seizure monsters do not seem to slow him down!

Matthew and the Neuro~~

Lets just say, we do not much care for Matthew's neuro!  He doesn't seem to listen to us much.  He is finally (FINALLY) agreeing to possible wean Phenobarb if we see even the slightest bit of seizure reduction over the next month.  We are documenting and tracking every daily activity, in hopes that the proof will be in the pudding! 

Matthew and J~~

After many months of deliberation and stress, we decided Matthew may need a nurse.  J is amazing.  We just love her and what she does with Matthew.  It is so refreshing to know that there is someone who loves and cares for our boy like we do.  Having a nurse really helps during flu and cold season when Autumn has appointments.  Matthew can stay home and play with J.  It was truly the right decision.  He gets more therapy and more one-on-one time now.  J--You Rock!

Matthew and surgery~~

Matthew continued to have chronic ear infections after one of his tubes came out.  Our new ENT suggested titanium tubes and removing his adenoids.  We went in last week for an overnight stay following the surgery.  Lets just say, our boy is a rockstar.  He did awesome, and we got to come home that day!!!!  He seems to feel slightly better regarding his ears; however, he sounds snotty and yucky when he breathes.  We are hoping this is just a "healing process" after the surgery, but we have a follow-up next week.

Autumn and her bottom~~

At our first appointment at Scottish Rite we were informed about wound prevention in children like Autumn.  We are diligent about applying cream to her bottom to keep from getting red.  Well, apparently there may be an infection or bacteria in her stool (yep, TMI)  and it is conflicting with her skin.  Her bottom looked a little red Sunday night after bath.  It was still red Monday morning.  When I changed her after her morning nap, her skin had gone from red to sunburned red and peeling!!!  We snatched her up and took her to the local ER.  They do not have a lot of knowledge about specialty patients and assumed we had put her in bath water that was too hot!!!!  After a good cry and a loud scream, we are probably heading to Scottish Rite tomorrow just to have it double checked.  It seems to be starting to heal, but our sweet girl doesn't even want to sleep on her back right now!

Autumn and ears~~

With this being Autumn's first fall/winter out of the NICU we have been a little crazy.  She was such a preemie, I am constantly worried about her immune system.  So far, the girl is a warrior!  We have battled two double ear infections in two months, but have stayed away from nasty other stuff (knocking on wood here).  We may very well be introducing Autumn to Matthew's ENT!

Autumn and her legs~~

Our diva is not listening to any doctors.  She may not ever "walk" like you or I, but let me just tell you, she is not letting anything hold her back.  She is starting to pull up on things are knee walk to them.  She is gaining control of what abdominal muscles she has and growing in strength and balance.  I don't think it will be long before she is "Autumn walking!"

Autumn and the terrible Twos~~

The terrible twos came to our sweet girl an entire year early!  She is really starting to exert her independence lately, and in the midst she has mastered the art of the tantrum!  We are very proud of her "go get 'em" attitude, but when she doesn't get her way she has started to pull her hair out and pout!  I promise words do not do it justice!!  So please remember us in your prayers.  The teenage years are already haunting me!

I think that about covers to big ones!  I will try to update more often!  Happy blogging!!!

Twas The Night Before Christmas

Twas the night before Christmas, 

when all through the house

Not a creature was stirring,

not even a mouse.

The stockings were hung 

by the chimney with care,

In hopes that St Nicholas 

soon would be there.

Here in our neck of the woods, Christmas spirit is all around.  More time is taken to make people feel special, and the ones you love truly come together to lend a helping hand this time of year.  

We are gearing up for a whirlwind few weeks with many celebrations to be had.  I think I am much more excited than the kids this year :)

My blog has been quiet lately, and I do apologize.  I will update soon.

In the meantime, 

We hope your Christmas spirit is abundant this year.

Are you getting into the spirit??