November 23, 2015

About my 6 year old

  Aubrie is a beautiful child inside and out. She has a tender heart, smart, loving, funny, helpful, intelligent, athletic.  But she is also EXTREMELY sensitive.  You look at her the wrong way, she cries.  She sees an animal hurt, she cries. You brush her hair, she cries.  You ask her to do a chore (that I know she can do), she cries. If she thinks she hurt your feelings, she cries.  Every time I turn around she's crying.  At least she usually cries.  Sometimes those same things will make her so angry that she punches, kicks,hits, spits, starts blurting words that she doesn't even know she is saying "I hate you, you ruin my life, I wish I wasn't your daughter, I wish you weren't my mom/dad, I hate the world, my room, this house".  Then she stops and realizes what she said, then she starts crying all over again.  She becomes so out of control.
  Sometimes my husband and I are so exhausted from trying to watch our words, our actions, our reactions.  Sometimes we are at a total loss as to what to do for her.  Finally, I sought help.  I asked her pediatrician to recommend either counseling or some sort of therapy for her, and/or for us, as parents.  I want to be able to help her find her words to explain how she feels and to give her tools on how to control her actions.  Some people think I'm blowing things out of proportion, saying that she is a typical 6 yr old, but I see her differently.  I have seen red flags since she was about 6 mo when she was a very picky eater and when she was a toddler and was more then a clumsy child and then 2 yrs old and couldn't talk, or when she became obsessed with the color blue and wouldn't take anything but blue things, and my list can go on and on.  Those were just the tip of the ice berg.  Since then "the small things" are just adding up, I don't see anything that is detrimental to her health, but I want to get things a little bit more controlled before we hit the hormonal teenage years.  All these small things are just adding up.
  I personally think she also has sensory processing disorder just like Sadie.  Not to the same degree and they have totally different sensitivities, but the more I've learned about SPD (which is why I had so much education about SPD the entire month of Oct.) the more I see it in Aubrie.  So after the holidays we are going to go to a therapist and have her evaluated.  We shall see what comes from the eval.  I just want to help her learn and understand how to control herself.

November 18, 2015

A Mother's Love

She holds her baby close to her, pulls it gently to her breast.
She knows in her heart when her child is sick, tonight there’ll be no rest.
When her baby cries she cries too, the tears roll down her face. She’ll find no peace ‘til her child is well, she’s faithful in her race.

Her love she gives so freely when the trials are at her feet.
But when they do come in she’ll stand and fight, not once will she retreat.
There’s nights that sleep doesn’t come but she will rise to face the day.
As long as there’s breath in her she’ll never fail to pray.

“Please dear Lord hear my cry and save my child from this pain.
I would feel so empty without her Lord, please send the Latter Rain.”

She’ll spend hours on her knees in prayer while the world is fast asleep.
She prays that God will make things right before the troubles get too deep.
She’ll fight the Devil toe to toe, not thinking of her own life.
If it means dying so her child might live, she’ll gladly pay the price.

There’s nothing like a Mother’s Love, no greater thing on earth.
It's to them that we owe our lives, no way to measure their worth.

Never take her love for granted, she’s precious in God’s eyes.
With all her strength she’ll give her love, the greatest sacrifice.

Author Unknown

November 06, 2015

A Halloween Birthday Party

  Sadie had been so sick for the past couple weeks, there was a huge debate on if we should have her birthday party on Halloween as it was originally planned or not.  The party was on and then the party was off, on off, on off.  Finally, my husband and I sat down and really talked about the whole thing and finally we said "It was on".
  The party was off because I really wanted her to be able to enjoy her birthday. She loves watching all the people and watching the kids help her open her gifts. But she had been so tired and crappy feeling that I knew she wouldn't want to watch the actions of the day.  She wouldn't enjoy anything. It was off because her immune system was already compromised, and any new germs that were brought into the house could set her back further.  Did we want to take that risk?
  The party was on for many more reasons, two of them was my own selfishness.  4 years ago on Halloween I was released from the hospital.  I left empty handed and drove away leaving my baby in the NICU for others to take care of.  It was one of the worst days of my life.  For the past few Halloweens I think of that moment and feel those feelings all over again.  I needed to replace those feelings with happy feeling and memories.  A birthday party would do that for me, especially cause it was for the child that I grieved for 4 yrs ago.  My other reason for wanting that party was so that I never had regrets.  What if Sadie didn't get better, what if something happened?  I didn't want to regret never having a 4th birthday party for her.  We also decided to have the party because Chloe and Aubrie really wanted Sadie to have a costume party and they had planned it for awhile. They had helped pick out food and decorations and just wanted Sadie to be happy with her party (they had planned games too, but those didn't work out so well).  Also we had the party because half of the people that would be here for the birthday party were going to be here anyways for trick or treating. The pros outweighed the cons.  The party was on!
  We had no regrets with our decision.  Lucky for us Sadie was starting to perk up on Friday night and on Saturday she was doing pretty good.  Still would occasionally cough/choke and took a couple of longer naps, but over all she was on the upswing.

A Sweet little puppy
A Cute Caribbean pirate

A Scary skeleton

My Girls

Some guests at our party

2 little kitties
Football player, pirate, batty vampire, skeleton, ninja
a pig and doctor

ninja turtles
creepy clown and cat
Well... I'm just not sure. Lol  He didn't have a costume, so he grabbed one of the girls dress up masks.
A game character (I don't remember the name of it, oops)
  I tried to be creative and stick with mostly halloween themed food. Some of it worked, and others...well, I get an A for effort. Lol

The girls wanted to decorate our walls with all of Sadies stars and trophies from school so that everyone could see what she accomplished this past year.  The sense of pride that Chloe and Aubrie have for Sadie is such an overwhelming feeling.  They have true admiration for her.  I love it!

Mummy hot dogs

Mummy Pizza
Orange vomit punch

Witches hats and acorns

Bloodshot eyes

November 03, 2015

Sick on her birthday

  My poor baby girl started to get sick last week.  Started with a little extra sticky drool that increased and increased and increased to the point that her face, hair, clothes were soaked.  It was gross.  Then came a fever, then came a nasty poo (sorry TMI), then she became extremely tired (to the point of being unresponsive a few times), then came increase in mucus and watery eyes, then came the cough/choking.  We went to the Dr's but nothing really came of that because her vitals were stable (just a low grade fever) and not many symptoms .  The Dr just thought it was a bad virus.  A couple days later she was still not improving, not getting worse, but definitely not improving. Another phone call to the Dr and this time she ordered a chest x ray, blood work and blood cultures.  Nothing showed up from those though.  Everything was normal.  This was good news, but at the same time, why is my baby not getting better? A couple days later I spoke to the Dr again and this time she decided to start antibiotics just to cover our bases.  Finally, she started to perk up on Halloween.  Not sure if it was the antibiotic, or it was just the end of the virus (14 days later).  Slowly, she started to stay awake for longer periods of times and we got smiles again.  Thank goodness!  I could breath again.  Otherwise, by the end of the weekend we were going to take her to the ER and possibly admit her to figure out what was going on.  Now she is completely back to her old, happy self and healthy again (except she still has a little too much drool).  
  It is exhausting having a medically fragile child.  The anxiety is ridiculous.  Even though I knew this was probably just a cold (because her sister also had a cold) the thoughts about what "just a cold" could do to her is like no feeling I can describe.  Yes, Sadie has been sick in the past, but for some reason I didn't have the same thoughts/feelings like I did this time.  Sadie mostly stayed in our eyes sight so that we could watch her closely, but with every sneeze, cough, choke I would hear in the baby monitor would make me hold my breath until I heard her again or I would run to her bed to make sure there was another breath.  If I slept at night I would go check on her frequently, praying with every step to her room that I wouldn't find her anyway but sleeping peacefully.
  When you have a medically fragile child you are automatically in the category of "borrowed time" because many of these kiddos are not given the best prognosis. This means that I live with the reminder that any day could be the last.  Each cold, cough, fever, any illness may be the one that takes my child. The upside of this is that I see each day as a gift, and I do my best to make them count. However, it takes a toll on me.

Sadie does not like being held, but when she is sick she will sit on my lap, cuddle, sleep.  That's how you know she is truly sick.  As much as I love these moments, I would much rather her be healthy and wiggling to get off my lap.

This was her actual birthday.  This is all she did all day. Not a great way to celebrate.