Friday, December 27, 2013

Fall Has Come & Gone

When the temperature gets below 50 degrees, I usually stay inside because it's too cold for me to get out.  I hate the cold and it makes me miserable.  Period.  There were a couple of days that the girls and I spent inside until it warmed up again.  There were also quite a few tender moments but these are the ones I want to remember so I am blogging about them.

One day I heard the girls snickering, laughing and playing in the kitchen.  When I snuck up on them, they were just playing away and getting along so well.  I hope they continue to be great sisters to each other.  

 In the spirit of "what does the fox say", one of our crafts this season was to assemble and decorate a fox.  They girls did pretty well and the foxes turned out great.

Happy belated Thanksgiving!  Unfortunately, this was the only picture that I took the entire day.  We were just relaxing after dinner and these two looked so sweet together.

Goodbye fall (and leaves) and see ya next year.

Saturday, December 21, 2013


We have experienced our first fall in our new house.  One of the many things that I love about this house are the 19 mature trees that are beautiful.  When it was spring and summer, I loved to hear the wind rustle the leaves.  Now that fall has come and gone, most of the leaves have fallen.  Our neighbors are out every two weeks or so raking leaves because there are that many.  

In the spirit of teaching our children how to work and serve others, we headed out to rake half of the driveway.  I think we had five or seven bags just from the driveway.  The girls did well and I was so proud of them.  By the way, I finally paid someone on Tuesday to come rake the leaves because the job was/is just too big.  The crazy thing about the leaves...they're back already!  You can't even tell the yard or the driveway was raked!

They are working so hard and taking their assignments very seriously.

Savannah had to spend some time in timeout because she kept destroying the piles that Scarlett and I worked so hard on.  She was exceedingly happy when timeout was over.

  When most of our work was done, I let the girls play in the last pile.  Don't you love to see your children happy?  I sure do :o)

Monday, December 9, 2013

Snow Day At School

On Nov. 15th Scarlett had a snow day at school.  The letters of the week were p and s.  The kiddo's were allowed to wear their "p"ajamas to "p"lay in the "s"now.  The snow was packing peanuts and it was pretty cool.  Younger siblings were also allowed to come play in the snow.  That's why you see Savannah.  I can't believe Savannah will be starting school in the fall.  What?!?!

 I do believe Scarlett's snow angel is my favorite pic.

The little boy in the green shirt is Mason.  Apparently, Scarlett is his favorite everything.  He looks out for her and always wants to sit by her.  I think it's cute.  Jeremiah already wants to know where he lives, lol!

Sunday, December 8, 2013


About a month ago we had some really cold weather and I decided to get the girls some new stocking caps.  Scarlett is into Hello Kitty and Savannah is into Spider-Man.  The other day Scarlett told me that she wanted to attend Hello Kitty College???  Savannah just wanted Spider-Man soup???  I have no idea where her love for Spider-Man came from but I love it!  We headed off to Target and together we found hats that they loved.  They are all ready for winter!

Scarlett was tired and hungry and was ready to eat after a day of shopping.  The last thing she wanted was to take a picture.  Savannah is usually game for anything at anytime.

The girls woke up and the hats were the first thing they grabbed.  Scarlett was in a much better mood so I tried my luck for another picture and I was pleased :o)

Sunday, December 1, 2013

Another Hospital Stay

On Nov. 11th Sophia developed a cough.  The next day it was a little better and on Thursday it was bad again.  Plus, she was not moving the air in her lungs well.  I called the doctor and she wrote out a prescription for a steroid.  We tried the steroid and she still wasn't that much better.  She would cough, desat, and we would give her more oxygen.  It took minutes before she was "stable".  On Friday I left to pick Scarlett up from school.  When I got home, her nurse met me at the door and said "Sophia's doing that thing again."  Both of us bolted up the stairs to her room and Sophia was clearly in respiratory distress.  I gave her all of the oxygen we could and I told the nurse to pack up because we're going to the hospital.  Afraid that I would eventually run out of oxygen, I used what we had left to get her to the hospital...after I drop the kids off at a friends house because I knew we would be there for a few hours. 
We arrived at the hospital and it was organized chaos.  I was so glad that several people that knew and love Sophia were floating that day because if I has to repeat her history one more time...   Anyway, the first thing they did was change her trach.

See that brown/green/yellow stuff in her trach?  That's not suppose to be there.  In fact, it is suppose to be clear like the rest of her trach.

Sophia was so mad and nothing I did would calm her down.  To be fair, if I couldn't breathe I would be pretty mad, too.  Anyway, everyone tried to soothe her and nothing was working.  Jeremiah called me and said that he was in the ER and was trying to get to us.  In the meantime, I told Sophia that daddy was coming and he would make her feel all better.  And you know what?  He did!  He got there and she was all smiles and the staff couldn't believe it!  What can I say.  Jeremiah loves his girls and his girls love him.

Is she sticking her tongue out at me or is it the timing of the shot?  Let's go with the latter.  However, I'm beginning to wonder if she associates me with pain.  I'm always there at her worst and I'm the one that always get her help.  And this is how she treats me???  Shameful!

If she could talk, I bet she was saying "I'm in the hospital?!  Again?!" 

After seeing the error of her ways, she asked me for my forgiveness.  Forgiveness was granted :o)

We were in the ER for about two hours and then she was admitted to PICU.  After several labs, tests, and an x-ray, it was determined that she caught a virus and had a bacterial infection at her trach site.  The viral infection is what did her in.  Because her lungs are so sensitive and so compromised, she can't fight things off the way that we can with "normal" lungs.  Over the next couple of days she got better and was suppose to come home on the 18th.  As I'm pulling into the hospital parking garage, the nurse practitioner called me.  Sophia crashed and burned a little bit and wasn't able to come home.  We had to wait another day.  On Nov. 19th, baby girl came home and has been doing okay.

Saturday, November 23, 2013


For Halloween this year we went to the trunk-or-treat at church, passed out candy to trick or treaters, and went trick-or-treating.  Last year the girls had so much fun passing out candy.  This year I decided to let them do it again.  When we were passing out candy, we were starting to get low.  So, I took the girls trick-or-treating to replenish our stock.  I didn't have to pack up and go the store AND I didn't have to spend any money...Jeremiah liked that part.  Upon our return, I noticed the front door ajar.  I knew that I had closed it when I left and thought to myself "this has Jeremiah written all over it."  I walked in and Scarlett was beside me.  The next thing I knew, Jeremiah jumped out of nowhere screaming and SCARED Scarlett!  Scarlett yelled so loud for so long and you could hear the fear in her voice.  She laughed at the end and was a great sport about it.  Anyway, our neighborhood was busy, very festive, and we had a blast.

This is just the loot from the trunk-or-treat at church.

 Sophia Lynette even got in on the action.  She was in her costume about three minutes and had to come out of it.  She was so hot and started to get cranky.  

Waiting for the trick-or-treaters.

I love my little pretties!

Monday, November 18, 2013

Surgery #9 - Revise G-Button Site

Back in October Sophia had granulation at her g-button site.  We took her in to have it silver nitrated but her doctor looked at me with the "she needs surgery" look.  Apparently, she didn't have granulation tissue.  That "tissue" was her stomach lining coming through her g-button site.  Because she has had the g-button for so long, the stoma started to stretch and her stomach started coming out.  Crazy as it sounds, this wasn't that big of a deal.  Anything that is not respiratory related, we can handle.  Well, Sophia can handle.  She had surgery on 10/28.

I never got the chance to take a picture of Sophia Lynette's g-button before surgery.  I got this picture off the internet so you can have an idea of what it looked it like.  I have no idea who this kid is!  Plus, Sophia's looked worse so maybe I'm glad that I didn't get a picture of that.

In post-op and did well!

That steri-strip is where they pushed her stomach back in.  That plastic device over the gauze is her new g-button.

She slept for the rest of the day and most of the next day.  She developed an infection right before we were discharged.  The antibiotic we were given didn't do anything for her.  The next antibiotic worked better and her infection cleared up.

Monday, October 28, 2013

Man Cave Gone Wrong

Five girls in the house and Jeremiah feels that he needs a quiet spot.  Usually, he would go and sit in the Porsche for a few minutes.  But now, we know where to find him.  Since we have plenty of attic space, he has decided to convert a portion of the attic into his man cave.  Last weekend he was in the attic messing around and the sub floor broke.  Before he could get off the sub floor the drywall broke.  I heard the noise but didn't think much of it because he always make noise when he's in the garage.  Granted, it was louder that normal but whatever.  

When he came inside, he told me had good news and bad news.  I always choose to hear the bad news first because the good news softens the blow.  The bad news was that there was a hole in the ceiling.  I immediately ran to the garage and saw this.

I know it's the garage but I don't care.  I don't want a hole in ANY of my ceilings.  Especially, in a house that we've only been in for six months!

The house came with a tank water heater but we removed it just before Sophia Lynette came home.  When we moved, Jeremiah wanted to bring the tankless water heater from the old house.  In order to get to the man cave, the tankless is going to have to be moved upstairs.  Why?  He needs this space for the stairs to his man cave.  Now he has to move the heater again.  In case you're wondering, he hasn't set himself on fire again...yet.

Saturday, October 26, 2013

Sophia's New Glasses

Last month Sophia Lynette had an appointment at the ophthalmologist.  He explained to me that she was cross eyed, farsighted, and had the potential to lose her vision because of her brain bleeds.  He wanted to put her in glasses and follow up with her in November.  His hope is that her eye muscles will strengthen and start to work in unison.  To accomplish this, she has to wear her glasses whenever she is awake.  On 9/11 Sophia had new eye wear!  For the first few weeks she did great.  Within the last three weeks Sophia has wanted nothing to do with her glasses.  Jeremiah wanted to know if they were "real" because "they look like they came out of a cracker jacks box."  Several people has asked if they were prescription glasses and I inhale, smile, and say yes.  Everyone responds by saying how cute she looks...and she is very cute with them on.  Here's how the glasses have been going.

This was day number four.  So comfortable in the glasses that she falls asleep with them.


Suddenly, things took a turn for the worse.  Last week she and I had it out over the glasses.  I put them on and she slid them up...looking right at me.

 Wait for it...

Wait for it...

 Then she erupts and refuses to wear them!

Still refusing.

 Calmed down to take a breath.

Back to refusing and is MAD!

Then I decided to leave her alone before her heart rate and blood pressure started reaching dangerous levels.

She was perfectly content with those glasses off her face and on her head.

 Not sure what is going on here but I'm pretty sure she's winning.

I decided to concede and Sophia wins again.  Dang baby!

Monday, October 14, 2013

Sophia's 1st Week Home

Life around here was CRAZY for the first four or five weeks after Sophia came home!  The hospital was suppose to send us home with all of her meds but everything wasn't there.  I spent the rest of the day and night trying to get those prescriptions filled at Walgreens and CVS.  Then, my front door turned into a revolving door.  There were so many people dropping by.  Nurses, health care company, therapists, DME company delivering supplies that was missing from our order, etc.  Then, the phone would not stop ringing because insurance or a doctors office was calling.  Next, I had to schedule ALL except one of her follow-up appointments.  The really exhausting part was/is scheduling her appts. around her therapy sessions, Scarlett pre-school hours, and me going to the gym.  Don't judge.  I have a lot to do and this my way of having "me" time...doctors orders, too...just off the record.  Obviously, we are more than ecstatic to have Sophia home.  It's been nice not having to drive to the hospital everyday.  However, when she was in the hospital, there were several people that did all of the handling and scheduling.  Now, I have to do it ALL.  Anyway, miraculously, everything is working out!  

My body was so sore for the first two days because of the stress I was under after she came home.  To help me out, Jeremiah offered to cook dinner.  Somewhere along the way, Liz wanted to help.  Having them cook lasted about two weeks.  I was done after they started fighting over who would do the dishes and who would cook what on which night.  Sigh.  I'm back to cooking and peace has been restored.

My family kept Scarlett and Savannah for the first two days after Sophia came home.  That was a huge help!  The pictures below are from the first week of Sophia being home.  The girls LOVE their sister!  They play with her, sing to her, hold her, and read to her.  It is the sweetest thing to watch.  Liz was still in Kansas and didn't come home until a week later.  They are some serious big girl helpers.  They turn equipment on and off.  They go and get something when I ask them to.  They have been so patient and have adjusted well since Sophia came home.  Amen for that!

 After a week of being home, we felt risky and brought her downstairs to join us for dinner.  It was fun watching her adjust to a new environment.

Another day we were off to the park...doctors orders!  It felt good to have the girls together in one place that wasn't in the hospital.

 We have to stay away from mass crowds...doctors orders.  I am more than willing to comply if that means keeping her lungs healthy and minimizing her exposure to people, germs, bacteria, etc.  However, fresh air is always welcomed.  She loved the park and I think she had a great time.

 Then she got tired and we packed up and left.  We stayed for almost an hour and she did great.

 Later that evening she started crying for a reason that I can't remember now.  This was our second time seeing her cry real tears and I wanted to capture the moment.  The first time was after heart surgery when she cried silently.  Remember that one?

 Scarlett was getting sad because her baby was sad.  Scarlett is sooo good with Sophia.

More the other eye.  I finally stopped taking pictures and comforted her.   

Doing baby stuff with daddy.  Daddy makes everyone feel better.

Happy to be home with her family!