Thursday, July 8, 2010

Truman Health Update

In the midst of all the craziness of summer we have been continue to work on Truman's muscle tone issues.  He has weekly physical therapy sessions and we also work with him daily.  He is doing incredibly well.  It is really amazing how much stronger he has become.  In the past few weeks he has really developed a sense of exploration.  He spends a lot of time trying to get into as much as possible!  He stood on his own for about 5 seconds the other day in PT which was very exciting!

The not so good news is that he has been continuing to suffer from a lot of congestion and breathing issues.  He has always had an extremely high palate which caused a lot of feeding issues when he was younger.  He also had nasal reflux which means that when he swallows he doesn't have enough strength sometimes to actually get it all the way down to his stomach so it comes up and into his nose.  Not as big of a deal when it was just formula--we were able to thicken it to help avoid some of it.  But it also caused and continues to cause a lot of congestion issues.  He also has really bad allergies that add to the issue. 

This summer has been particularly bad.  He started snoring (well snoring more) than before.  He was constantly sounding like he had a stuffed up nose.  He also developed a cough.  I finally decided it was time to head back to his Ear, Nose and Throat specialist to see if there was anything else we could do.  He took one look in his throat and one in his nose and informed me that while he does have some congestion caused by allergies...his actual problem is that his tonsils and adnoids are gigantic.  As in tonsils almost touching gigantic.  The sound that we always thought was him breathing through congestion is actually him  breathing through his tonsils and adnoids.

So Truman gets to get his tonsils and adnoids removed.  At 16 months old.  He is going to have surgery...again. 

Currently we are in a waiting mode because we are trying to get him into the ENT at Children's Mercy so he could have the surgery there.  His muscle tone issues make anethesia difficult.  But they can't get us in for an APPOINTMENT until October or November.  Then the surgery couldn't take place until December or January.  His ENT in Lawrence doesn't think we should wait that long.  He will continue to have breathing issues and we could run into a more emergency situation.  So I am trying everything I can to get him into Children's earlier but it isn't looking good.  So I am also trying to come to terms with him having surgery at LMH.  LMH is a great hospital...but it isn't a Children's hospital.  They don't deal with 16 month olds with special muscle issues every day.  How many 16 month olds do they actually have get their tonsils and adnoids out? 

I know I don't have much time to wait so I am working through every possible way I can to get into Children's and when I have exhausted all options I will call and schedule the surgery for here. 

The saga continues.  But man, I love that little boy so much.  How could you not?

Happy 4th of July!

Scout's Room Project

Scout asked to redecorate her room to update it into a "big girl" room now that she is 7.  We started the project this week...

Here are some before shots...

I purposely left it just as messy as it gets so I could really feel accomplished when this whole thing is done!

We have now removed everything from her room so we can scrap the popcorn off the ceiling and paint.

Chad has spent the past few days on that project.  The ceiling is now scraped and painted.  We will start the wall painting tomorrow night. 

I'll update with more pictures as we finish!  Big Girl Diva Rock Star room here we come!

Scout's Birthday

My oldest daughter turned 7 on the 4th of July.  Yes...she is a little firecracker from the very beginning!

We had our annual birthday BBQ and celebrated her special day with our entire family...which has now grown to almost 20 people!

She was overwhelmed with gifts again this year.  My she is spoiled!  A just a tiny bit rotten...but in the best way possible!  She asked for "Big Girl Diva Rock Star" presents.  Your guess is as good as mine...but we all tried!  The scarf and necklace from my nephew Kyle, his girlfriend Liz and his son Brian was a big hit.  She also asked to redecorate her room to make it into a "big girl" room in a, yes you guessed it, "diva rock star" theme.  She got everything she needs to make it a very special room including some really cool art for her walls.  To top it off her CeCe and Papa (Chad's parents) gave her a big girl bike!  Now if we can just convince her to ride it without training wheels.

I started making this flag cake for Scout's 1st birthday and it has now become an annual tradition with people fighting over blueberry, raspberry or "both" pieces!

Scout is growing up so fast!  I can't believe that she is already 7.  It seems like only a few years ago that I was pregnant with her!

She is beautiful isn't she?  Inside and out.

I found out that I was pregnant with Scout when Chad and I were living in Chicago.  We were living in an apartment on the 4th floor of a walk-up.  I really couldn't imagine trying to have a baby in the city (or walking up those stairs 9 months pregnant, let alone with all the baby stuff) so we decided to head back to Lawrence.  Knowing this part of the story you can probably guess that she wasn't exactly "planned".  Wanted, yes.  Planned, not so much.

Most people know my pregnancy story by now so I won't bore you with the details.  For those who don't I will sum it up by saying that I became very, very sick and eventually went into heart failure.  It is called Peripartum Cardiomyopathy--or heart failure caused by pregnancy.  It was a horribly scary time and I was actually given only 6 months to get better...or not.  The not being permanent damage to my heart, a heart transplant or even death.  Whoo-hoo, right?  Great way to start off life as a new mommy.

Every cloud has a silver lining right?  Because I was so sick I was forced to slow down (OK, basically stop) and just enjoy my daughter.  For the first 6 months of her life I spent every waking moment soaking her in and learning all that I could about her.  We slept a lot.  She was very rarely out of my arms.  Even when other people wanted to hold her!  Our close relationship started with those first few months of trying to make an imprint on her memory in case something horrible would happen.  My illness also made it so I had to stay home.  There was no way that I could return to work so I was given the gift of being a stay-at-home mom.  I loved it.  We were a team and we took on the world and my illness together.  She would come with me every day to Cardiac Rehab and would coo at the "grandmas and grandpas" there while I worked out to try and improve my heart function.  I changed her clothes like 3 times a day.  And did I mention how much we slept?

When I made it past the 6 month mark I was able to finally relax a bit and just enjoy being with my daughter.  She was amazing to watch.  She started crawling at 5 months and walking at 9 1/2 months.  She was a chatterbox with a huge vocabulary by the time she was a year old.  She loved people and people loved her.  Scout has continued to be an achiever.  She is constantly blowing me away with her intelligence.  She loves to learn.  She is also a very sensitive little girl.  She has a heart the size of the United States.  She is creative and incredibly funny.  The child can drop a punch line like a seasoned pro!  She is beautiful with these amazing blue eyes that speak for themselves.  She is stubborn and bossy.  She loves to be the center of attention but at the same time she can be very shy.

Our bond that began with those first few months has only grown.  We can look at each other and instantly know what the other person is thinking.  We have the same taste in almost everything and not in a "I want to be like my mom" way because she thinks that I want to be like her!  She is one of my favorite people to just sit and talk to.  I am a very lucky mom to have such an amazing daughter.  She came into this world with a bang and I have no doubt that she will leave behind her mark on the world.  I am just so honored to have the chance to watch her do it.

Happy Birthday Scout!  I love you so much.

Monday, July 5, 2010

So much to blog about...

And yet way too tired to even try! 

Scout turned 7 and I need to post my birthday story and pictures.  Medical news about Truman.  Pictures of the 4th.  The start of a major redecorating job for Scout's room.  Lord, I have a lot I could post...

But if I stay up much longer I will fall asleep at the keys.  So--tomorrow it is.  I promise.