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!

Friday, August 29, 2014

It... Well.. This...

Yesterday at clinic we were going about our regularly schedule activities, blood draw, weight, height, check up... We hooked up with a new friend Teagan #2.
And also saw Miss Elizabeth..

Alex has been feeling kind of slow lately. When we visited with our team explaining his extra sweating, his poor appetite, his growing fatigue... Coupled with some of his blood work there was a big concern that Alex was failing and needed a little more tweaking then they felt comfortable doing in office and at home. 

So.... We were set up with a room in the ICU. Alex was doing good morally until he realized were we where and got frustrated by the circumstance. I explained that he needed to change his Milrinone from .5 to .75 and the likely hood of staying in the ICU was small.. 24 hours... We also added Spectra or Septra (I haven't actually seen this drug yet so I don't know what it's called) but we know it helps him not get infections. We have hit his immune system and need to be pro active in keeping him healthy. Flu season is creeping up on us, our whole family/extended family have pledged to help him stay healthy by getting flu shots. We can't get the mist because it stays "on you" for 14 days.. So he could potentially pick up something in those 14 days. Boo! 
Once settled in we saw Miss Jen who helped make things way more comfortable. This was an out of control time. No bags packed, no green snugly blanket, no toothbrush. So having Miss Jen here made everything better for Alex. I made it home last night to my mom and sister Pres.. They are awesome and have taken care of the little people. Jeff came up to be with his boy. Then home to sleep. While Gator is in ICU he has a nurse with him all the time so he stayed here without being scared. He had a great night and morning. He has ordered everything from room service.. 
He is gaming with Estiban from the playroom! He is tolerating all the changes.. We are doing well. 

Thursday, August 28, 2014

Wednesday, August 27, 2014

Mommy and the littles

Awesome selfies

May sucks her lower lip like this all the time... 

Sunday, August 24, 2014

Just keep swimming swimming swimming....

Clinic day for Gator and me. Grandma and Auntie Preslee day for the girls.... 
First thing when we got up to the hospital, a blood draw. We got to see Chels, Cody, and child Life Carrie... Those are the best ones in labs. We are totally bias. And it wasn't even scary or sad because IV team comes to draw through his PICC... Then we went over to Cardiology where we said hi to Trav and Jaime at the front desk. They took us to the squishy couch room. Formally known as the bad news room, but has been better now. We did E.T. Finger and arm hugs... Then we visited with Elizabeth who we adore. She is Gators buddie who did his exercise test. Sabrina the pharmacist came in next. She said such hopeful things. That she never wanted to make us feel bad, but she knows Brotis doesn't usually do much the first round. While she is a realist and can't say it will work this time, she also said don't throw in all your chips now and give up hope. Whew!!! Jen and Dr. Molina came next. We have a silly thing with Dr. Molina... A while back we had some peachy rings from the vending machine. Dr. M mentioned how much she liked them too. Gator taught her how to make a crabby patty. She asked if he had ever had the other flavors. She brought him two whole bags of flavors that were so awesome. While we were out at the store the next week, we found gummie frogs and strawberries and so we had to take them in for Dr.M to try. Then while we were at the the health fair we found gummie ear wax. We took those to give to Dr. M.... It is our mission to find a gummie anatomical heart... Wouldn't that be so stellar??? They are happy to report that we are just cruising along right now. We popped up to visit our Teags buddy and then headed down to RTU for Gators Brotis treatment. It was a great and long day. 
Friday we all went to the Ogden temple open house. We could check another awesome thing off our bucket list. It was beautiful. 

Ry and daddy left us from there. They spent the rest of the day at Lagoon. It was really fun until they got poured on and decided they better call it. The rest of us went clothes shopping. We stopped by grandma's work to see her for a quick minute. Eden went around hugging the grandma's at Beehive and letting them try on her princess crown. Don't they look lovely?

Saturday we cleaned... I have been sort of neglecting the deep clean stuff because we have been super busy. But we cleaned the garage,toilets, and mopped floors... Aaahhh, that feels better. While I was mopping the floors I had moved all the chairs to the center of the family room. The little girls were playing on them when I overheard Eden say. "Hey May wanna play exercising?" Hahaha.. That doesn't sound like very much fun. 
Gator has another Brotis treatment today. It's daddy's turn for the fun. 
My very favorite thing that MayLee says lately....
Anytime someone leaves or after I finish speaking to someone on the phone she says "hoe dat" =who was that? 

Thursday, August 21, 2014

Gator Says

This happened.. 

It's come to this

We got a bit of news last week. The Brotizamib didn't change Alex's antibodies. While that means so many things, it mostly means that our chance of matching to a donor heart are very very slim. Our very professional but loving cardiologist explained that we should enjoy our time together. Miracles happen all the time, and if Alex is supposed to get a heart he will. We should make memories and we should find joy in each day. We shouldn't stop our lives. 
This was hard news for me. I wanted to be strong and I wanted to stay hopeful. But I am frustrated. I am sad that my boy is struggling. When we first had infertily issues, and when misscariages kept happening, I wasn't angry at anyone or anything, but I felt very out of control and vulnerable.  I just couldn't predict when it would get better or would change. I was confused about how I should act, especially in public. That all seems to be the same now. Forgive me. 
It has been a great weekend for other reasons. We always seem to be lifted, encouraged, and strengthened right when we need it. 
Friday we went up Springville canyon to the ward camp out. It was so fun to be together with our church family. The kids loved the freedom and friendship too. We let MayLee and Alex off oxygen that night. You know, fire and oxygen just don't mesh well. I should have said "everyone out of the van and roll in the dirt" because every child was covered from head to toe in filth. There were these steep hills that every kid felt the need to climb and slide down. Because of how steep they were you had to navigate the decent on your booty. My job as mom was to make sure kids didn't get flattened by cars passing on the little road, keep them from drenching themselves in the stream, make sure that they didn't throw rocks down the steep hill, and move May away from the fire because she wanted to touch the darn thing. It was heaven. It was real life fun. 

We couldn't stay over for a couple of reasons. Jeff and I were attending a temple sealing in the morning and we didn't think we could make it home in time. He also had a baptism to prepare for and attend, and we had receptions later that night. We also managed to work on the bathroom downstairs. We hope it will be finished this week. Hurray!!! 
We wanted to make sure sleeping in the tent is crossed off Alex's bucket list so Sunday night we set up the tent and all slept in it together. The kids did great except May who kept kicking me. I bailed the air mattress and slept on a sleeping bag till she did the same kicking thing with Jeff and I pulled her down with me. Stinker!!! I love sleeping out. The best part is your nose is cold but your body is warm. Plus all that fresh air. We pulled two air hoses out to the tent for Alex and May. In our situation that is killer camping at it finest. 

On Monday we had an incredible experience. Primary Children's Hospital Miracle foundation helps so many children. They do so much more than just bring financial relief to parents of patients. They bring the community into the lives of patients so that we are buoyed by those willing to help. Mountain America has an amazing golf tournament called Swing for the Kids, that they have been doing for 11 years. That means they have been helping families like ours for longer then Gator has even been alive. What an impact they have made. They asked Jeff to come and share our experience with the hospital and Alex's story. We of course would love to help in any way. When we arrived, many of the golfers were still out and so we got to ride a golf cart (which thrilled my kids to no end) to pet a golden eagle. What an amazing bird. Gator loves Wild Krats, he was asking the bird handler all kinds of intelligent questions he had learned about these eagles from the show. I was amazed by his knowledge. 
After returning to the club house each of my older kids got to go in the Mountain America money machine. Each person is zipped into the encloser. They get ten seconds to grab as much money floating in the air as they possibly can. Ry was very very serious about this. She walked away with $81.00, Gator scored $47.00, and Eden grabbed $28.00 big ones.... They were thrilled. That kind of money for these kids is like a small fortune. 
The fed us a fantastic dinner. Jeff spoke about how wonderful we have been treated, how thankful we are, and how generous those strangers who are willing to help us have been. He did an amazing job at sharing our gratitude. (Soeaking must come easy to him). 
After Jeff finished, Alex wanted to say "thank you for helping kids like me". 
I began to leak from my eyes when the whole room rose to their feet, clapping. It was just what my heart needed and those men and women in that room had no idea what we had just been delt only four days earlier. Then the amazing Sterling, CEO of Mountain America said they had a little gift for Alex. They pulled a white sheet off of an electric Yamaha quad. Alex's face was priceless, his mouth dropped open as he looked at Sterling and then at Jeff in unbelief. This boy who adores anything with a motor and who hasn't been able to ride a bike or anything really since his pick line was placed, can ride this and not get tired, or worry about his lines, and it is stable being on four wheels. His emotions took over at his complete joy and he burst into tears. Happy/excited/incredible tears. The best part was he was just happy about riding it around at Jeremy Ranch. When he found out he was taking it home he did another happy dance. MACU blew his mind. We had no idea when we were asked to help out, that we would be showered by such generosity. I am sure this is what kings and queens feel like. We simply wanted to share our gratitude. There is so much good in this world. 

Thursday, August 14, 2014

Health fair

Every body knows that free and fun are right up my alley!!! Today I took my crew of four to a health fair... It was so fun!!! There was so much to see and do. We played mini golf, got our faces painted, checked out life flight/ambulance/swat vehicles, walked through a giant colon, touched a real live gator and got free dinner and a whole bunch of swag... But the good/useable kind of swag.. Like tooth brushes, small packages of tissues, color changing pencils, and little electronic pouches... 
But my all time favorite thing that happened was.... 
Jeff called while I was trying to push a baby in a stroller on oxygen and cart the other tank behind me, to top it off, we were trying to do this all over grass. Well... I wanted to hear what Jeff was saying. I stopped our whole convoy for a minute right in front of a cosmetic surgery tent.. While I listened, Alex explored the tent as far as his tether would allow. He was curious and asked the nurse what these amazing clear liquid bags were. And why they had such little to big ones... He was just so fascinated by them and needed to reach up and squeeze and pat them. The poor nurse was like... Um.... Uuuuhhhh.... I finally said, "those are for implants" and started laughing. What is it with my kids and me laughing? He started bawling... Until I said,"honey, they are for boobies"..  Then he bust into giggles. 
I don't know if it was my choice of word (I was in a panic, don't judge) or if he realized what he had done. Silly kid! 

This is Elvis the alligator with Alex-gator. Ry was even brave enough to touch him.