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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, February 25, 2016

Disneyland day one

Someone was excited to get up and get dressed for character dining:) l


























Drive day 2

We stopped in Las Vegas at a gas station to fill up the mini van of wonder and use the restroom. As we walked into the convenient store there was a line formed waiting to pay at the register. In line is a man wearing a turban (sorry if this is incorrect verbiage) loud enough for everyone to hear Eden says "Mom!!!! Look a genie!!" I am sure I turned three shades of red. I explained that it was a turban and that he wore it for religious purposes.. And so totally disappointed she says "ah darn it, I reeeeeeaaallly wanted my three wishes".

I totally bummed her out. 

We made it to our very wonderfully warm hotel room. We were hoping to go to the beach, but it was pretty dark. We aren't used to the beach and can't navigate it very well in the dark and so we decided it probably was better to wait. 

Checked off the live list.

Our family finally made it on a trip.
There was so much build up and pre planning. If you remember we had originally planned to go on this trip in November. But Alex needed time to heal.  We had an absolute riot,
Before we went the kids earned Mickey Money.... I bought things they could use at Disney or in the car. I think they really liked and responded well to this incentive to be good. 

We also had this darling countdown my cousin JJ made. She sells them in her Etsy shop. The little girls really liked being able to see how many days left....

I packed each of the four younger kids in Ziplock bags, each bag had an outfit, undies, socks and any hair bows that went with that outfit. We will definitely reuse this packing stratigy for all our trips. It worked out so great because we originally wanted to wash clothes mid week, but the washer at our hotel was bad news with weird hours so we actually couldn't wash like I wanted. I can't believe I didn't get a photo of my awesome packing. Shoot darn. This was when my OCD really showed. 
As we are driving out of our neighborhood, MayLee looks out the window and says "Are we in Disneyland?"  Both Jeff and I bust up laughing. We were sure it would be a very long drive.

We traveled to St. George the first night. Got to out hotel a little later than we originally planned, but we made it. 
The trick with taking kids with medical needs on a vacation is that you have to be even MORE prepared. So we had medications, plus extras, oxygen, nebs...
Lots of lugauge for a family of seven. 





The rest of January..

January 23rd marked a very special day for my Gator Boy!!! One year with his amazing new heart. It was such an amazing day to live through again. We are so grateful for the donor family. Now we have a huge responsibility to use it to its fullest. The greatest way to spend the day was celebrating one of our favorite cousins and heart heroes,Chels. She was  the most beautiful brides. 





Then, guess what freaked me out???.... Ry had New Beginings. For our church, that is a preview to the youth group she will belong to. I feel old, and amazed all at the same time. Almost 12 years has flown by so fast. SO FAST. I really only have about 6 more years with her at home. Lighting speed.

I am still cutting hair and when I get a very brave soul, I get to try some things I don't normally do.. Looking good Cayson! 

Eden had a field trip for school. She loves school, she is learning to read, and loves to write letters. It makes me so happy that she enjoys education. 


Sometimes lunch should be fun.. 


  


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