Wednesday, October 27, 2010

Gotcha

Friday
Big day
Important day
Gotcha day

Friday we finalize our sweet girl's adoption

Six months ago we fell in love with our daughter when we first laid our eyes upon her

Right before she came home~~she was a tiny thing

Tiny
Sweet
Spoiled!!!


Not too much has changed in six months


So much bigger now~~she's our chunky monkey



She is now crawling
Pulling up on her knees
Autumn "walking"

She has two whole teeth now!

She says

"Mama"
"Dada"
"Bye bye"

She is a tiny thing with a huge attitude!




Our diva
 Our princess




Matthew's favorite toy

Lillian Autumn Grace







Saturday, October 23, 2010

Its The Great Pumpkin

I have a fascination with pumpkins
They are all unique and beautiful
So off we went with our unique and beautiful children 
to see the unique and beautiful pumpkins

Perfect weather
Perfect moods ~~well Autumn was not impressed with the pumpkins
Perfect end to an awful week
 




Matthew was in awe of the pumpkins
My special little man
His special little pumpkin



Nana joined us too
We think she's quite unique and beautiful as well



The pumpkin patch was a enchanted place
 We walked
 We talked



 Matthew seemed to understand the fun of it all
We had not witnessed his smile before this day in a few weeks
I think the pumpkins are magic


 My little pumpkins
Our favorite little patch
One amazing morning!


Friday, October 22, 2010

Pleasures

It seems my blog has been quite whiny lately.

I apologize for that!!!


Here is to the greatest pleasures in life:



Morning Coffee

Great Books 

Fall Walks

Sleeping Babies

And those moments you never thought would happen:

Matthew bearing weight on his legs~~yes I realize he is crying but look at what he can do!!!






Have a fantastic weekend my blogger buddies!

Thursday, October 21, 2010

Dr. McMaybe

Today was a BIG day in our household. 

We decided to search for a new pediatrician, and today was our first appointment with Dr. McMaybe.  I am lovingly calling him McMaybe until I know if he is going to work out for us.  So far....so good!

We arrived early.  If you know me at all, you are not surprised.  Once we checked in, the sweet nurses asked if Matthew was sick.  I explained that he was not "sick" but we did think something was going on.  They informed us that there were children who may be contagious in the waiting room, and asked us if we would rather go get something to drink and come back.  I explained to them that Matthew seems to have a recent aversion to his car seat, and we would gladly wait our turn.  Within ten minutes, Matthew's name was called.  They explained to us that we would still be waiting, but we could wait in Dr. McMaybe's office away from the other children. 

I was impressed with their concern!

Being the organized control freak that I am, I made sure we were well prepared with information regarding Matthew.  I had a list of current medications, current doctors, MRI results, as well as current labs.  I also had my ever-growing list of questions to ask.  Dr. McMaybe listened to our concerns.  He thoroughly examined Matthew.  He spent as much time as we needed going over everything with us. 

And unbelievably, we did not scare him away!!!!

So now we are preparing for more tests!  Yay!!!!  {Can you hear the sarcasm in my words}

We will be trotting our busy little bottoms to a GI doctor and a Geneticist.  Both are almost unbearably scary for me.  We are changing up some of Matthew's medications as well as starting a sleep aid. 

It is just amazing to me how weightless we felt upon leaving Dr. McMaybe's office.  He really listened to us.  He really understood what we were talking about.  Dr. McMaybe may soon become Dr. McAwesome!

Captain Diaper Demolisher

I am getting a cape.

Along with my cape will be tights...yes tights, and they will be pink!

And my superpowers will consist of:

*Entertaining two toddlers at once
*Understanding all medical lingo without having to google things
*Cleaning my house with a twitch of my nose
*Changing poopy diapers in the blink of an eye
*And of course never having to shave my legs because its a perk of the job

I will be faster than a runny nose, stronger than a tantrum throwing toddler, and will look amazing all the time! 

I'm thinking Captain Diaper Demolisher


The wonderful unknowing citizens I rescue prefer to pay me with snuggles, hugs, and kisses!

On a rather eventful and amazing day I receive the golden key to the magical diaper pail! 

Stay tuned for more adventures in the heroic tales of mommy hood!

Tuesday, October 19, 2010

Just Keep Swimming

It is 5:30 a.m.

We have been awake since 3:30 a.m.


Life is sometimes just not fair.

As of right now, I have two sweet babies that do not feel good.

This past week has been a constant fight.  We have been the ER twice, once by ambulance, and the doctor's office all for Matthew.  And still, the doctors are not taking us seriously.  They have been dismissing his pain and symptoms and sending us on our way.

But detective Mommy thinks she may have figured out what is causing him pain, thanks to the amazing Ketogenic Yahoo group!!!! 


There were days this past week when I wanted to shut down and cry.  I wanted to carve a little hole under a rock, just for me, and live in self pity land. 


About the moment I wanted to crawl under the covers and let someone else handle our issues, an amazing this started to happen.  Matthew began to smile again.  He started to laugh again.  These beautiful sights have been few and far between since surgery.  Its unbelievable how easy it is to want to give up.  


"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle."
Albert Einstein                                   


So this week I am taking a lesson from "Finding Nemo" and I am going to....


Just Keep Swimming   


                           

Friday, October 8, 2010

Bullies

I feel defeated today.  
Bullied. 
Pushed in a corner and laughed at.

If I am the small kid in the school yard, then our doctors are the big bad bullies. 

We have been anxious for today's appointment.  It was the first follow up to the start of the Ketogenic Diet.

We woke up early.  We were dressed, coffeed up, and on the road right on time.  Traffic was good.  Matthew was in a good mood.  It was too good to be true!

Ten minutes out of our driveway Matthew started screaming.  He was in pain.  You could see it on his sad little face and hear it in his pain stricken cries.  Brandon and I began discussing what we thought may be wrong.

Dirty diaper...no
Hungry...no
Tired...well maybe but not to cause this

Then Brandon said something that started my mind to thinking~which is NEVER a good thing.  He thought Matthew might be uncomfortable in a sitting position.  We talked about how last Saturday at our local festival, Matthew would not go into his stroller but insisted on being held.  I shared that he didn't want to eat in his feeding chair or sit in his bouncy seat all week, though I had attributed that to him being spoiled.  I also thought about how this week while Josie and I walked the kids to the park Matthew screamed all the way there.  I thought maybe the sun was just in his eyes...but that many coincidences?

What in the world would cause our sweet lil guy to be in that much pain while putting pressure on his body.  Could it be impaction? Gas?  Reflux?  Something else?

So as he screamed the hour and a half to the hospital, we added his new symptom to our ever increasing list of things to talk with our doctor about. 

We arrived on time.  We signed in.  We filled out paperwork.  We were called back to a room within fifteen minutes.  That should have been a clue that today would NOT go as planned.

Dr. M came in to see us.  Normally we see the N.P. but as she was out on maternity leave we were actually seeing the neurologist, this being the second time we have ever seen him.  He was friendly, cordial.  We discussed Matthew's progress since beginning the diet.  We have seen vast improvement to his alertness.  He is beginning to express his opinions more.  He tries to focus on objects better.  All around we have been very impressed with what we have seen.  However, the lack of seizure control is still alarming.  We decided to go up in his ration.  We are going from a 4:1 ratio to a 4.3:1 ratio.  This means will be adding more fat to his already fatty diet.   We are also adding Klonipin to his drug regimen.  Thankfully, this med will only be a "cluster" med, meaning we will only use this when Matthew has cluster seizures.

 So far...so good.

Then we asked Dr. M about what he thought about Matthew losing oxygen and turning blue when he got upset.  This scary predicament is happening twice a day at least.  He thought this was another seizure and to use the Klonipin.  I disagree. 

We asked Dr. M about Matthew being uncomfortable all the time and if that could be reflux.  He suggested contacting our pediatrician as it was not his concern.  I disagree.

We asked about Matthew's rash that has been misdiagnosed four times.  Again, not his department.  I again, disagree.

So we walked out of the office with a new prescription and a list of phone calls to make.  I started them immediately. 

We got a hold of our Keto dietitian right away.  She gave us great pointers and was recalculating his diet already.

I left a message with our pediatrician's nurse for them to call us back. I felt productive already.

On the hour and a half drive home, Matthew screamed again.  This time we pulled over and tried to adjust him four times.  None of which worked.  In the midst of this I missed a call from our pediatrician's office.  I called back only to leave another message. 

In the first message I mentioned why I needed to speak with them.  I explained the loss of oxygen, the tremors we are experiencing, the rash, and the abdominal pain.  I am slightly more than thorough.

We arrived home.  We unloaded the car.  We put Matthew on his tummy, the only seemingly comfortable place for him to be, and we waited for the phone to ring.

In never did....

I have something to confess....I became so overwhelmed by Matthew's increasing pain that I lost it.  Lost it is probably not accurate.  I cried.  Splotchy face, can't breath, snot running, crying.  It was beautiful!

I was angry. 

Here lately we have heard the same story over and over regarding Matthew.  He has problems because he is a sick kid.

I. DON'T. CARE.

He is our sick kid.  He is our responsibility.  He deserves a good great quality of life.  It is their responsibility to offer that. 

From now on, I refuse to take any crap for the big bad bullies in our school yard.  I am stepping up and stepping on toes.  Our baby boy is worth more to us than that. 

So tonight my blogger buddies, I needed to vent, as I am sure we all do. 


When I came home and was snot sloppingly crying I found an old torn up post it note in one of my books.  It is what altered my mood, and allowed me to look at this from a new, powerful point of view:


"Hope begins in the dark, we wait, we watch, we work, we don't give up."


Anne Lamott

Wednesday, October 6, 2010

Day to Day

I thought I would share with you all my day!  Enjoy!!

5:00 AM    Autumn wakes up again having night terrors.  We snuggle her with us, which does not seem to be
                  what she wants.

6:30 AM   The alarm starts going off, but I snooze-attack it for a few (or thirty) more minutes.

6:35 AM    Matthew decides his alarm is going off as well, so we all pile into our bed and snuggle.

7:05 AM    Someone needs a diaper change~~And we are awake!

7:10 AM     Matthew is getting his blood sugar checked by Daddy while I make his four morning meds along
                 with his morning bottle.

7:15 AM    Autumn decides she can wait NO longer for breakfast, so in the high chair she goes with *gasp*
                  a premade sausage biscuit!

7:20 AM   Matthew recieves his first bottle and morning meds while Mommy and Daddy are praying today
                he won't throw them back up.

7:30 AM   So far no upchuck, so I get to check Matthew's ketones.  For those of you who don't know what
                 this means, I get to "play" with his urine.  Not so glamourous.

8:15 AM    Autumn decides she is done with breakfast by throwing her biscuit at me and laughing.  In the sink
                 for a morning bath she goes.  

8:20 AM   Clean and dressed children playing on the blanket in the living room means Mommy gets her first
                 cup of coffee **First of MANY**

9:00-11:00  AM  Two to three days a week we have a therapy that comes at this time.  If not, then Mommy
                pretends to be said therapist, and fails miserably! 

11:12 AM  Bathroom break for Mommy!

11:30 AM  Autumn goes into her high chair for lunch which usually consists of me trying to feed her
                  applesauce and her spitting it out at me, showing me the new trick her daddy taught her. 

11:35 AM  While Autumn finishes the rest of her lunch, Matthew is given his second feeding of the day. Then
                   his diaper is changed, he is placed on his tummy on his blanket, and usually drifts peacefully off to
                   nap-land.  Then Autumn is due for her second bath of the day, redressed, bottle/cup given, and
                   nap-land takes her away as well.

12:00 PM   Ahhhhhhhhhhhhhhh~~Nap time.  Mommy can relax now~~Yeah right.  I make beds, do     
                  laundry, wash dishes, set something out for dinner, make phone calls, try to check on Facebook,
                  all the while still not having brushed my hair, eaten solid food (does coffee count?) and am still
                  wearing sweat pants.  I know I know~you are so jealous right now.  

2:00 PM  The children are awake.  Diapers are changed.  At least one of them has left me a wonderful
                 surprise that now requires a trip to the dumpster.  Autumn gets a small snack, while Matthew
                 plays in his little room.

2:30 PM  Autumn is done with her nap, this time she is pegging me with animal crackers and yelling
                Mamamamamamama!  I do love to hear that, though.  Matthew is now screaming his head off in
                protest of his little room.  So into the living room we go to play.

2:34 PM  One of my darling children has given me yet another gift.  This time Autumn decided to undo her
                diaper and now we have it everywhere.  Third bath for Autumn for today, and a new pair of
                clothes.

2:30 - 4:30 PM  I sit on the floor trying to entertain two toddlers.  Not the easiest thing I have ever done.
                          Autumn proves just how courageous she is, and crawls to the entertainment center where
                          she proceeds to pull up on to her knees, look back at me, and then fall backwards.  Bonk
                         on the head!  I kiss her boo boo.

4:30 PM  Matthew gets prepared for his third feeding of the day.  I also give him his afternoon meds.
                Autumn is rubbing her eyes, so back down for a small nap she goes. 

5:00 PM  I try to start dinner.  Given this day, my husband and I will eat a gourmet meal of sandwiches! 

6:00 PM  Dinner is served, at least for me and Autumn.  She plays with her food, and eats most of mine.
               Matthew swings in his swing and coos at his sister making funny noises.  Life is grand.

6:30 PM  I check Matthew's blood sugar again.  This time it ticks him off.

7:00 PM  Bath time starts.  Autumn is first.  She plays and scoots around.  We giggle and laugh at the
                bubbles!  Lotion time for her. Matthew gets a bath next.  He loves the water.  Lotion time for his
               as well.           

8:15 PM  Autumn gets her night time snuggles before her bedtime bottle.  Then is off to visit the Sandman for
               her.

8:30 PM  Matthew gets his night time meds and his last feeding for the day.  We place cotton balls in our
                diaper ( I told you it was glamourous.) 

9:00 PM  Daddy is home!!  He rocks Matthew to bed, while I sit down to blog, only to discover that I have
                been wearing two different colored socks today, and surprisingly I have nothing to say.

9:30 Matthew finally falls asleep.  I shower and fold laundry.  My bed is defianly calling my name now.

10:00 PM  I check facebook, catch up on blogs, make a to do list for the next day, and maybe read a little.

10:45 PM  I have fallen asleep reading and now have a page of my book stuck to my check. 

11:00 PM  Matthew wakes up for the first time tonight.  He wants to be put on his belly.  He dozes off pretty
                   quickly.

11: 20  PM  He wakes up again.  This time its not going to be so easy.  We snuggle and rock.

12:00 AM  Matthew goes back to sleep, and now I have to potty!

12:05 AM I crawl back into bed to try and sleep.

12:45 AM  Autumn is having another night terror.

2:00 AM Autumn is finally sleeping soundly.  I crawl in bed and think about what tomorrow will bring.......



Ahhhhhh crap.....Its already tomorrow!

Tuesday, October 5, 2010

Panic

My heart aches today.  

Matthew has seized since the moment he woke up yesterday.  He normally has about twenty seizures a day.  We have not seen any great results yet, but are determined to stick this out and hope for the best.  Yesterday he had at least seventy five seizures.  They varied in all types.  He jerked, he zoned out, he had clusters.  And now I am at a loss.  

To add to that, he has been holding his breath when he gets upset.  I spoke my concerns with our doctors, and they assured me this was normal for his age.  Well, today his lips turned completely blue several, several times!

I want to take his pain away.  I want to hurt for him.  And yet there is simply nothing I can do! 

So today, blogger friends, I am at a loss.  I need prayers and wisdom.

Friday, October 1, 2010

Inspiration

Happy Friday blogger friends.  Today is a busy day for us as we prepare for Autumn's 1st birthday party tomorrow.  However, I wanted to leave you with some inspiration today.  Watch this and you will have a lighter happier heart today!