Sunday, January 31, 2010

Scout Afternoon

Scout and I had the chance to spend the afternoon together and it was fantastic.  It was nice to focus all of my energy on her and her needs.  She was happy to have me all to herself too.

I never realized just how hard it is to have more than one child.  And it isn't the daily living that makes it so difficult.  It is the guilt of not giving enough to either child.  It is the impossible task of having enough time to give each one special time while trying to juggle the needs of the other.

Because Scout is so much older than Truman it is easier in some ways and much, much harder in others.  She had almost 6 years of mommy and daddy all to herself.  I can't imagine how hard it must be to share us...even with her brother that she loves more than pizza.  There are moments I see it in her eyes and it just kills me.  She would never, ever say that she doesn't want her brother but you can tell that she misses our little family of 3.  And to be honest there are moments that I do as well.  Ahh, the imperfect mother comes out!

I love my son more than I can ever articulate.  He is a light in my life.  He is a part of me that I didn't even know was missing.  There are moments that I am so filled with my love for him that I almost burst.

But sitting on the floor today playing board games with my little girl made me a little sad for the simplicity of life before there were two.  I know it is horrible...but it is real.

On the other side I also feel guilty that Truman will never know life as an only child.  He will never be the center of our world like Scout was for so long.  There are times when I wonder how I am ever going to be give him everything that I gave to Scout...the time and energy, the complete focus of life.  I was able to stay home with Scout for almost 2 years.  With Truman I was back at work by the time he was 2 months.

So today I gave my energy over to Scout for an afternoon of board games and mommy time.  We had a blast.  But when Truman woke up from his nap both Scout and I were ready to see that little grin and tickle his tummy and shower him with hundreds of kisses.

With everything that was "lost" growing our family by one, so much more was gained.  Scout and Truman have a sibling which is a blessing that can never be taken away.  As for me I am going to find more time for special moments with each of the kids and always try to remember that in the end it is quality not quanity that really matters.

Saturday, January 30, 2010

Vomit in the Morning Part II

I am not indestructible after all...I got it.  The dreaded stomach bug that has been going around.  It started last night and today has been miserable.

The worst part is that it took away a Saturday.  As a working mom it is so hard to miss an entire day that I get to spend with my kiddos.  I shed  a few tears over that but keeping them away from the germs and not witnessing their mommy performing an act from The Exorcist was probably better in the long run.

Hope it really is only a 24 hour gig.  I'm starting to feel a bit better.  I really want to make it to church in the morning.  We have been SO bad lately.  The cold weather has kept us home and then the kids were sick for 2 it has been awhile.

Wish me luck.  I am thinking about eating some toast.

Wednesday, January 27, 2010

And some people say we don't need healthcare reform...

I spent a good portion of my day on the phone with doctor's offices.  What great fun.  We are the process of getting Tru scheduled for a muscle biopsy and to repair is umbilical hernia.  (Although I might miss the hernia a is a great way to tell if he is full.  We call it his "turkey popper" because his done!)  We want to do it all at once so he only has to be under anesthesia one time.  We also had a retest of his urine yesterday to see if he had gotten over his "bladder infection." 

Why the quotes?  After a painful cath situation where my son did not, to the awe of everyone involved, produce any urine Truman was sent for additional blood work with a baggie attached to his wally wally.  Great fun for him I am sure.  They stuck him with the needle, he peed a bag full.  He had been running a 104 degree fever for no real reason so they were looking for a bladder infection.  A few hours later I got the call that he did indeed have a bladder infection.  So we started an antibiotic.

BUT suddenly, two days I received another phone call saying he didn't have an infection after all because his culture was normal and in fact the original UA dip was normal as well.  The nurse told me to keep giving him the medicine if "he was getting better because it seems to be working on something."  She did inform me that he had protein and ketones in his urine but that didn't seem to bother anyone but me.  We are currently testing for metabolic disorders that have major kidney involvement...protein and ketones are not a good thing.  So the next day I called back, got another nurse and tried to see if we could retest him.  She told me that I had already been told the test was normal, the doctor hadn't given instructions to retest, so I should listen to the doctor and basically shut up and mind my own business.  Happy mommy, right?

A few minutes later I was at the office handing in my records release form and calling to schedule an appointment with a new doctor.  Low and behold the following day I received a phone call from the doctor himself saying that we should retest in a few days to make sure something wasn't going on with his kidneys.  Hmm, interest thought there Doc.

So we retested yesterday and were told that we would have the results first thing this morning.  I started calling around 11:00 and finally around 2:30 my cell rang...I raced to my purse trying to find my phone (see my last post to understand the problem there) and missed the call by seconds.  I quickly called back and was told that I would have to leave another message because they had moved on...then I heard the beep in my ear that she had left a voicemail...I told her to get the nurse on the phone or the doctor I didn't care but I wasn't going to get off the phone until I spoke with someone.  She very pleasantly (note the sarcasm) told me to hold.  The nurse picked up a few seconds later and told me that his test results came back normal.  HURRAY!  Now I don't have to deal with that office any longer...we are still changing doctors.

Then I got on the phone to schedule the stuff at Children's Mercy.  Let me preface this part by saying we LOVE, LOVE, LOVE Children's Mercy.  It is an incredible place filled with people who love children.  From the guy mopping the floors to the head neurosurgeon everyone there has one goal--to take amazing care of children.  I feel so safe when I am there.  But, scheduling is a pain in the butt.  As you can imagine at a top notch Children's hospital it is difficult to get things scheduled in a way that makes sense.  We will go there 3 times in one week because we can't get all of our appointments scheduled on the same day...with the same department...

Anywho, the nurse I was talking to was amazing.  As was to be expected.  She explained the procedure, she told me about the doctor, she asked me questions, she answered mine in depth.  Awesome.  Then she got to the "pre-auth" portion.  Apparently we have to have pre-auth appointments with the orthopedic doctor who is doing the muscle biopsy, the anesthesia doctor AND the general surgeon who will perform T's hernia surgery...all separately.  3 appointments.  One doctor does them only on Mondays, one on Tuesdays and the other is available anytime...if you can get the appointment.  So the awesome nurse told me to deal with general surgery first because they are typically more difficult.  I called and was actually able to get in next Tuesday.  I will start the process tomorrow with the other two doctors because I was too damn tired by that point to do anything but celebrate the fact that I had at least accomplished one appointment.

Still waiting to hear from the genetics clinic...but we did get the bill.  WOW.  I won't go into the gory details, but one test, yes ONE TEST, was over $5000.  My insurance company must love my family.

So to recap--Truman has clean urine.  He has an appointment with general surgery.  He will have an appointment with ortho and anesthesia.  We are getting a new primary care doctor.  It all is costing a butt load of money.

Big day.  But look at that face...

Worth it all...

Monday, January 25, 2010

I need to allow myself time.

I have a confession.  I do not have a case for my sunglasses.

Now before you think I have lost my mind and share that you too do not have a case for your sunglasses, let me finish!

I watched a woman today place her sunglasses into a case and then place the case in her purse.  Not an amazing sight, I understand...but it made me realize that I am not that woman.  The woman today also didn't have random things falling out of her purse when she reached in to get the sunglasses case.  Her whole person was calm with the ability to slow down, even just for a few additional seconds, and put her glasses in the case.

Wow, deep...right?

I don't slow down.  I typically don't take the extra seconds to place my change from the drive-thru into a special cup that will then be available for parking meters.  Instead I scrounge around on the floor of my car hoping that I snag a quarter and not a dime.  I don't have a special box for my photos, carefully labeled by month, event or even by child.  I have boxes full of random photos that might be from high school and might be the birth of my son.  I can't be bothered to organize my make-up drawer by types of make-up, making sure to throw out anything older than a year.  I dig through the pile of years worth of crap that I have gathered and don't ever use.  Don't even ask about my spice cabinet.

At times I have tried.  I bought a label maker.  I've purchased all the organizer do-das on the market.  I have owned a sunglasses case in my lifetime.  It just won't stick.  I usually stick up my nose and say that I have more important things to do than worry about my daughters crayons daring to mix with her markers.  I try and justify the fact that by not being so concerned by those little things I have more time to other things.  But I secretly remember the feeling when I have opened the make-up drawer (after a fit of cleaning for some unknown reason) and felt so calmed by everything being where it is supposed to be.  How nice it was when I was cooking for those three weeks after I took the time to organize my spice cabinet.  In all honestly how much time to I save spending hours searching for things all the time instead of taking a hour to make a place for things to be? 

I was jealous of a woman who placed her sunglasses in a case today, because she allowed herself the time.  

Saturday, January 23, 2010

Tru says sNOw thank you...

I downloaded a bunch of pictures from my camera tonight...I am such a horrible mom and always wait to do these massive downloads.  If my camera suddenly blew up I would be in big trouble!

Anyway, I found this picture of Truman's first time in the snow and I had to post it.  The look on his face is priceless.  He shows everything on his face!  He is so expressive.  The little dude will never be able to get away with anything!

Nope.  Not impressed.

Scout on the other hand was thrilled to hit the snow.

I tried to give him a little more time and even tried the "your sister likes it...see!" method but my son wanted nothing to do with it.

Thank God.  I hate snow.

Sleep Over

We are hosting a friend of Scout's tonight and the girls have had a blast.  They have done all of the typically 6-7 year old girl things...giggle, play "best friends," watch movies, eat too much sugar, giggle some more, create beautiful art projects, play Wii, giggle, get louder, get the picture.

Truman was a little confused at first but then he fit right in...
I swear I even heard him giggle a few times just to be more authentic.  I didn't get Scout's friend's mom's permission to show her face so I can't post the adorable shot of all of their smiles!

Eventually the girls decided that little brothers shouldn't be involved in their sleep over fun and Truman was sent packing.  He is now sleeping soundly while the girls are still giggling away downstairs.

Thursday, January 21, 2010

Just a Spaz NOT a Spasm!

Praise the lord and pass the potatoes my son does NOT have Infantile Spasms.  In true Booth fashion we found out today that he is just a Spaz...not a Spasm!

What an incredible moment.

I spent last night working through the reality of the disease in my head.  I found some peace with it, not totally, but I was heading there.  I spent a lot of time praying that my son would find peace with the way his life developed.

This morning my husband, mom, dad and I headed to Children's Mercy with the thought that our lives would be completely different when we returned home.  I actually took a moment before I walked out of the door just to breath the last few moments of the "old" life in to my lungs.  The test wasn't that bad considering they have to glue 28 electrodes to the head of a wiggling 10 month old who has been rudely awakened at 4:00 in the morning and not allowed to go back to sleep.  Our EEG tech was awesome.  (Her name was Amy in case any of you end up in EEG some day!)

I was standing at the end of a long hallway when I say Dr. LePicheon come through the door.  I swear it took an hour for him to get to us.  With a grin he said, "I have some wonderful news..."  And my heart stopped, in a good way.  He explained that the marker for Infantile Spasms was not present.  That the head drops were caught on the EEG and there actually wasn't any electrical changes on the EEG!  AMAZING!

I am going to bask in the good news for a while.  The reality is that the journey we are on is far from over.  In all actuality Truman might be dropping his head because he doesn't have the muscle strength to keep his head up.  We are also now headed into surgery for a muscle biopsy and to repair his umbilical hernia.  The genetics results are still weeks away...but WHO CARES TODAY!!!

I'm taking the night off from thinking about the "what-ifs" and snuggling up with my little Spaz.

Wednesday, January 20, 2010

Neurology Update

We didn't exactly get the information we wanted to hear this afternoon at the neurologist.  Truman doctor thinks that he is having Infantile Spasms.  Basically it was the worst possible potential diagnosis that he could have given us.

Infantile Spasms is a scary seizure disorder that affect children between 3 months and 12 months.  They typically "stop" by the age of 4.  I used quotes because the seizures don't really stop...the change.  They typically turn into an extreme epilepsy disorder that causes multiple types of seizures that are not easily controlled by medications.  The other big part of the Infantile Spasm disorder is the affect the seizures have on the developing brain.  Most children, and I mean 90%, develop decreased mental function.  We don't exactly know what that means, but the stories we have heard are not good.

Truman is going to have an EEG at 7:30 tomorrow morning.  The EEG will show if he has hypsarrhythmia, a specific marker brain wave pattern.  If he has it, he has Infantile Spasms.  If he doesn't, he doesn't.  Fairly straight forward.  If he does have it most likely he will be admitted to the PICU to start treatment.  The treatment is six weeks of a drug called ACH.  It is a heavy duty steroid treatment that is our only hope of decreasing the amount of damage to the brain and the intensity of the seizures.  It might or might not work...but it is the only hope.  Our doctor says that the quicker the seizures are controlled the better the outcome.  So we are moving as quickly as possible.

If he doesn't have the marker on the EEG we are back to waiting for the results from the genetic screenings.  Dr. LePicheon (the neurologist) says that the seizures have nothing to do with the low muscle tone or developmental delay that Tru is already the EEG won't provide an answer for that, but at least we will have an answer for something.

Here is a picture of Truman during his last EEG.  He was only a few months old and so damn cute.  It sucks that I have this picture...but I want to HOPEFULLLY show him just how strong he was as a baby someday.  I want to look back at these photos and laugh about the struggle we went thru and how everything has worked out in the end.  I want to show his first girlfriend pictures of his funny hat.  I want so many things...
Please send out some prayers and good thoughts for us tomorrow.  We have felt the incredible support through all of this and we need a bit more now.

Tuesday, January 19, 2010

Vomit in the Morning

This morning we woke up at 7:15...I am usually out the door by 7:30 to drop off Truman at daycare and get to work.  You can imagine the panic that set in and the incredible scramble that my family did to get ready for the day.  Amazingly we got Scout to the table to eat breakfast and wait for my niece to come over...she takes and picks her up from school on Tuesdays and Thursday.  I was running thru the house trying to make sure that I was fully clothed when a little voice from the kitchen says, "Mommy?"

Not wanting to slow down I said, "What??  Do you need something??  You know we are running late!"

Another small, "Mommy?" came from the kitchen so I ran down the hall and put my head in the doorway only to see...a vomit covered child.  Yes, Scout had thrown up all over herself and the table.

Imagine how horrible I felt realizing that I was "busy" that I missed my child throwing up!  I grabbed her up and carried her to her room to get cleaned up...getting covered myself (Oh, the joys of motherhood.)  She had tears in her eyes and looked like a poor lost puppy.  I quickly made the decision to keep her home from school, called my mom to get her ready for Scout to come over, cleaned her up and changed her into pj's, cleaned myself up, packed a backpack of stuffed animals and games and then was thrilled to see my niece walk in the door.  I was saved!  She would be able to take Scout to my mom's house.

Then as I am grabbing my coat, Truman's coat, the baby bag, my purse, my briefcase and a lunch tote full of Truman's food my husband breezes by and says, "I gotta get going!  See you later."

Hold up Buck-o.  Guess who also needs to "get going."  I was surprised that I didn't completely lose it but I very directly told him he better help me or he would be sorry.

We made it to daycare and work surprisingly not too late!

I called my mom later in the morning to check on my poor sick child.  I had felt so horrible all day that I was so wrapped up in life that my little girl was ignored during her moment of need.  I was already planning a trip to the Toy Store to make up for my horrible reaction to her.  And then my mom filled me in...

Scout had coughed and then felt like she had something weird in her throat so she had stuck her finger in her mouth to get it out...and gagged...and threw up.  SHE WAS FINE!!  She told my mom as soon as she walked in the door what she had done.  Then proceeded to have a great day of TV watching, junk food eating, and general grandma time.  

Lesson learned.  Slow down.  Ask questions.  Don't assume that just because you see vomit in the morning that the whole day is ruined.

Heading to Children's Mercy tomorrow to see Truman's neurologist.  Wish us luck.

Monday, January 18, 2010

Tooth Fairy

My six year old lost her first tooth a few months ago.  It was such a huge moment!  I completely remember losing my teeth and how excited I was for the tooth fairy to visit.  The only problem was that I had no idea how much money the tooth fairy would leave...I think that I got maybe 25 cents?  Maybe 50?  So with inflation what would a tooth fairy leave today?

In a panic I put $2 into the special box under my daughter's pillow and I was so excited for the next morning to see her face!  I stuck the tooth into a little box in the medicine cabinet in my bathroom when I also realized I had no idea what the tooth fairy actually did with the teeth she picked up from children.  It seems a bit gross to keep teeth but I couldn't just throw it away, could I?

The next morning she was beyond thrilled.  She bounced thru the house holding the money above her head and giggling like a mad woman.  She talked about all the things she could buy with her "2 bucks."  Then she got on the phone to call the grandparents.  She excitedly told them that the tooth fairy had come and left 2 bucks under her pillow.  The smile on her face was worth every penny.  Then I got on the phone...

"2 dollars??  You gave her 2 dollars??  For one little tooth?  I guess the tooth fairy got rich since you were a kid.  I think you got 10 cents a tooth.  You do realize that she is going to lose all of her teeth, right?  That is going to be one expensive mouth!"

What?  In my excitement of playing the tooth fairy I hadn't thought about the future cost per tooth.  Adding it all up in my head I realized that I had set myself up for a nice deposit into my daughter's bank account.

So, a couple of nights ago my daughter lost tooth number 2.  She was just as excited to place the little tooth in the special box under her pillow.  Just as excited by the knowledge that she would have 2 bucks the next morning.  And then she added to the pot by telling me that her friends got more money for the bigger teeth and since she got $2 for the little tiny ones just imagine what the tooth fairy would bring for her 2 front teeth...$5?  $10?

And I thought diapers were expensive.  I hope that the tooth fairy doesn't become a victim of the financial downturn in 2010!

Saturday, January 16, 2010

New Year's Resolution

I decided my New Year's Resolution this year would be to start a blog.  I love to write, I love to read other people's blogs, so it seemed like a resolution that I could actually stick to.  So...did anyone notice the date?  I think that the fact that it is January 16th and I am just now starting the blog should be a great example of why I decided to name my resolution blog "Why I'm Not Perfect."  At this point in my life I have come to realization that "perfect" is not going to happen.  "Perfect" is a word that is no longer an acceptable goal.

A little background on my "perfection" situation.

Growing up I was always told that I could be anything I wanted to be.  I was encouraged and loved and given opportunities that other people could only dream about.  I'm not bragging--just being honest.  My parents were great people who cared about raising a woman not just a child.  I was very lucky.  I was also told that it was OK to fail as long as I was trying.  As long as I put myself out there the end result really didn't matter.  My parents also told me to ignore the naysayer's.  That it didn't matter what anyone thought of me as long as I was OK with myself.

Sound "perfect" right?

The only problem was that while all of this parental encouragement and ego boosting was occurring, I was also under a microscope.  I lived in a town where literally everyone knew my name.  And not in the happy "Norm!" way on Cheers.  My dad was an important guy in my town.  He owned the local radio stations and had a daily radio show.  He used this show to talk about local current events, interview important people and embarrass his children.  OK...I don't think he really meant to embarrass us, but he did on an almost daily basis.  (I'll try and share the "my daughter became a woman" radio show at some point, if I can stand the horror in actual print form.)  Everyone knew my dad growing up.  Add in a grandfather who was almost more popular than my father and it was difficult to go anywhere without running into someone who knew me.  Or at least they thought they knew me.

So the struggle to look "perfect" began.  I had an image to keep up.  I didn't want to embarrass my family or start the rumor mill going with some mistake that I made.  Sure--as I got older I rebelled against, well, almost everything...but I still was hyper aware of my public image.  I tried to move away a couple of times but it never stuck.  Then I realized a few years ago that I not only grew up in this world but I had embraced it as an adult.  I took jobs that put me in the public eye.  I volunteered and got involved with my community.  I put myself into the position to continue having a "perfect" public image.  I guess it wasn't that bad after all...

I am known to plaster a smile on my face and I always respond to people with "Doing great!  How about you?" even when I feel like my world in about to explode.  I try and wear the right thing, drive the right car, be friends with the right people.  All in the name of perfection. 

And I have done it to my children.  My daughter is six and already understands about putting on a face for the world.  And I hate that.

So, why am I now deciding to admit my imperfections?  Why now on a blog that the world can see?  Because four days ago I sat in a doctor's office with my ten month old son while a doctor discussed all the reasons why my son isn't perfect.  No--I am not talking about not being perfect because he wore the wrong label or didn't get in to the right Mommy and Me music class.  My son is not perfect because he potentially has a genetic syndrome that has hard wired his body to fail.  A doctor pulled apart my son's features, his beautiful face and body, and discussed how his eyes were too far apart, his ears tilted a little too far back, even his toes curled the wrong direction.

And the entire time she was talking I wanted to grab her and scream "Don't you see he is perfect?  Don't you see the incredible little person he is?  I made him!  I made that little guy that you are so easily seeing as some sort of genetic fluke.  He is perfect."

And he is.  He is perfect in all of his imperfections.  Just like me.  Just like my daughter and my family and everyone else in this crazy world.

Now I have decided to celebrate the imperfections of my world.  I am going to embrace the fact that I sometimes give my daughter chocolate cereal for dinner because I am too tired to cook.  I am going to celebrate the fact that I have a room in my house that I don't let anyone in because I throw all of the junk in there when they come to visit.  I have picked my nose, farted in public and peed my pants.  WHOO-HOOO!

Instead of waiting for the test results to come back and tell me that my son is not perfect, I am going to tell you right now that he isn't.  And that I am just fine with that diagnosis.  He is exactly who he is supposed to be and he is loved more than he will ever know because of that.

I invite you, whoever you are out there, to enjoy the journey of acceptance with me.  Not in a self-help book kind of way...but in an honest, who really gives a damn, let it all hang out kind of way.

If you were able to make it this far you now understand another couple of reasons I'm not perfect...I can't spell and I don't know when to stop talking!