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Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Sunday, February 7, 2016

Day #6- Coping

Often times people say "how do you make it through?" 
There are some incredible coping tools that I was taught...
#1- quit thinking that I was the only person in this world who was afflicted. It doesn't help to think I was, everyone, EVERYONE, has something that they are experiencing. My belief based on my faithis that these experiences are why we are even here on earth. So I need to rock my experiences. ALL OF THEM. 
#2- it's not me. It's my village that carries me through. It's my parents/in-laws, siblings, neighbors, friends, heart mom trust, ward(church) and by extension my stake, the teams of doctors and nurses and hospital folks, kid's school personnel, pediatrician, and hundreds of kind hearted people who share a bit of themselves so that the broken parts of me are filled in, rather than leaking out. 
#3- gratitude... I am just so darn thankful for things that others do in my behalf. Almost every single person I have ever met is good, they want to be helpful and caring. Not very many people in this world are deliberately trying to be stinkers. And if they are it's cause their trile is bigger than mine and I should extend a little patience their direction. If you are genuinely grateful for the efforts of others, chances are they want to do even more because they see the value. 
#4- being depressed, sad, and frustrated has it place and time. I have heard that people grieve differently and that is true. My time frame is a little shorter. Not because I don't feel these emotions, but because I can't usually change the outcome. I can't change Alex's heart, Mays lungs, my defective lady parts... But it is exhausting to be angry. It is physically tiring to be sad for a long time. 
#5- I have the best companion and best friend. Having someone to trust completely and who will love me regardless of my grouchy times.. Yes, folks... That is my biggest and best coping strategy. 

CHD challenge Day #5- doctors appointments

Day #5- doctors appointments.

Can be done in pajamas.

Day#4- Weight gain

Day #4-weight gain.
Ummmmm mine from stress?? Oh no, Gators. Well he can still fit his tiny hiney in 4t pants at 8 years old. He loves food as long as it is exactly what he wants. Steroids made him super puffy and heart failure made him look 8 months pregnant. His five year old sister is slightly taller and heavier than him..... And yet he owns it! 
This was two days after being home.. Steroid cheeks are super cute.

Day#3- Medications

Day #3- MEDICATIONS..
Gator has been on sooooo many different medications almost every route. This is his cabinet. Sign me up for pharmacy school..

CHD Day #2- Diagnosis

Day #2- Diagnosis
It was kind of weird to go back and read the very first entry on our blog and think about how Alex was diagnosed. We found out at an 18 week check. It was right before Christmas and I wanted to know the gender of the baby so I could buy a little gift for it. Both my mom and my mother in law wanted to know also and suggested we ask the tech if they had just a few minutes to peak. I had lost twins right before I got pregnant with Alex and so seeing that he was truly in there was another of my hopes. Well sure enough she saw that he was a boy and then she saw something else. I knew right away that something was off because of the way she left the room. It was the same way she left to grab the doctor when the twins werent viable. Our doctor couldn’t give us much info because this wasnt our regular 20 week ultrasound and told us not to worry and to enjoy the holiday.. WHATTTTTT!!! he also refered us to Doctor Su at Primary Childrens Hospital. That was when the fun began………. His original diagnosis in utro, Hypoplastic Left Heart Syndrome..

CHD challenge day #1- Heart Hero

Day #1- heart hero.. Gator boy has given us more than amazing friends and associations.. He has given us patience, hope, faith, relying on God, gratitude, joy, and soooooo many other things. He is one of my many heart heroes!!!
#chdphotochallenge

Friday, January 22, 2016

Friend types

May- "Mom, can we be friends?"
Me- totally!!
May- Can we be holding hands friends?
Me-(grabs her hand) Absolutely!!!
Then just because I love that we are holding hands friends we skip around while holding hands.. She erupts into giggles.
May- can we be snuggle friends too? 
Me-this just keep getting better!!!

Oh and by the way, I am not friends with teething.. I will take the baby.. But teething is definitely not my friend. Almost three on the top and four on the bottom and only seven months.. He is going to have a wicked gap.. 

Just because you can't see his Voodoo Baltic Amber beads doesn't mean they aren't there. He likes to keep them all safe in his neck meat.