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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.

Friday, January 31, 2014

Blessed

I meant to post yesterday. Sometimes hours slip by so fast and my responsibility  as mommy means no minutes to do so. Everything went smoothly yesterday. Sometimes miracles and blessings are not what we expect them to be. We pray and fast, those prayers are answered if we are willing to see them. Alex usually feels pretty yucky from the anesthesia. Yesterday he was calm and restful. The doctor was able to take the measurements needed and coil the collaterals during his cath. Today he felt better than he did before we came in. His saturation levels were around 85 when we got there and 94/95 when we were leaving... I felt as though our prayers have been answered. I am so grateful for your faith and strength. 
We stayed in the recovery unit. It isn't like  staying on serg, cardio, or infant... But we survived. 
He had to lay flat for quite a while. It wasn't so bad with his green snugly blanket and tablet. 
We are a team. 

Gator went home with Papa this afternoon to relax. They did this puzzle and watched movies and snoozed a little. 





Thursday, January 30, 2014

One of his portraits

This is what it looks like to have collaterals coiled off.. So very interesting. 
Jeff is back with him now.. He did great! 

Cardiac Cath day!!!

Most things for Alex's heart transplant evaluation have been scheduled and moved on... Some times I feel at neck break speed... Whip lash anyone? On some days we/I hide at home for an ugly grief session until I can put on my big girls and face the challenge. (Or muddle through) I get so frustrated that things are out of my control. I suppose that is what this trial is meant to teach me. Giving up the control to the universe.. To Heavenly Father... To those who will help. In the end I realize that once I do forgo that control issue; healing, fighting, and peace will soon follow. 
So today wasn't as scary and worrisome as it could be. We dropped off the girls so very early.. We know we are loved when we show up at our helpers houses at 5 A.M. In jammies to. We also got 5-6 inches of fluffy white stuff. The good kind that makes great snow men. It pushed all the gunk out of the air so Gator was itching to play in it. The roads were great beyond the neighborhood. Gator was happy all morning and compliant as usual. Just a little on the hungry/thirsty side. I could only say " Me too!" Other than that, he is great at not stressing out. He was excited planning Ramen noodles for lunch.. He also chose watermelon 'sleepy air'. We left him a little while ago. 
The gist of this procedure is; pre-listing doctors like to have a clear idea of what pressures are like in your heart. Also, they like to coil off collateral veins. 
To explain collaterals, think of a house.. It has a main water line... If you turn on one water faucet at a time you get great pressure. Having collaterals is like having all faucets, the shower, dishwasher, and washing maching going all at the same time... The pressure isn't that great and therefore makes a trickle... So, they take these tiny wires and essentially shut off the faucets or extra veins that his body has created. It is hoped that it will improve his blood flow. Okay that was a really rough explaination. Hopefully it made sense. 




Monday, January 27, 2014

The help

Even smashing potatoes for dinner is tough work sometimes. 


If you don't sleep well at night, you might be sleepy during a shower... After a shower and while mom does her hair. 



Tuesday, January 21, 2014

The things today.

I very much love this Mormon Message! 

          Come What May, and Love It

Today we went up to the hospital for labs, another PRA, and clinic. Gator did fantastic. He didn't even cry when he had his poke. Probably because Chels did it for him again. She is fast and explains things to him and it doesn't even hurt. He is becoming very brave with needles. Clinic was a measurement of weight, height, and listening. He sounds like a washing machine instead of a drum. He is also a little guy and is not much bigger than his little sister who is three years younger than him. Just to give you an idea of his bitty-ness. They both wear 4T pants. Gator will be 7 in April. I guess it would be okay if he had a short daddy, but his dad is 6'4". He is genetically supposed to be a little taller, I think. His case will be presented tomorrow in a meeting. Transplant will discuss their findings, along with Doctor Su. I am sad to not have our visits with Doc Su anymore. Once we are with transplant we have a new Doctor. Lucky for us we really really like Doc Everitt, she makes leaving Dr. Su better. I think he will still peak in on us every now and then. We are pretty attached to our Docs and I think that feeling is mutual. Then the kids and I ran around trying to figure out insurance stuff. After that we rushed home to get to Eden's dance class. 
While Eden was at dance, I took Gator to school. After dance we went to find some rubber mats for our new van!!! Eeeep! Squeeel !! It is absolutely the coolest car I have ever driven. New to us and so awesome. If mini vans are not your dream car, that's okay.. I happen to love them. A lot less miles, a lot younger then Gertie the blue, and totally decked out! 

We grabbed the kids from school after that and finally came home to do homework, start dinner and pick up a little. It was a long productive day. 


 


May

Why yes dear, that would be located in the children's section of the library. 
Hahahahaha !

Monday, January 20, 2014

A Sunday afternoon

Somebody figured she was sick of her O's for a minute and pulled it right off! I am always surprised how different she looks without it and grab the camera to document. She is darling with it too. She really really wanted my phone right this moment hence the grouchy face. 

While I fussed in the kitchen these two buddies played. Not always nicely I might add. They are learning how to use kind words and that a person is way more important than a game on a tablet. It ended up getting shut off and they got to choose something different. 

This is what she was doing. I can't believe a 9 year old can make such a darling hair style but she did! All by herself on her own head. That takes talent!



Friday, January 17, 2014

Mays first Birthday cake smash in Chrome Filter



I had this amazing cake smash planned for MayLee. I had researched on Pinterest just how I wanted it to be. Then May got sick and she just wasn't up to it all. We did it anyway. She also isn't using her oxygen so I filtered everything in Chrome. I am pleased to have this memory. She had a good time destroying her pink cake! 





















Thursday, January 16, 2014

Moving along

Daddy and I had our enormous transplant evaluation day yesterday. We visited with a team member from each part of our big team. Overwhelming as it was we are moving forward. Gator man still has a few tests we need to do in order to officially list him. Then it's the waiting game. Thank you all for the continued prayers,strength and love. I would really love to comfort eat through this (cookies, cakes, pretty much every lovely thing is out!).. I would need to be rolled around after... Instead i have found other ways to get my mind off of things. 

MayLee had a well check today. She is doing beautifully. She also got shots today! 


I made some masks from an online tutorial! They turned out pretty cute! 

I think my next project will be some tank cozys. May's O's tank could be totally dolled up!

Friday, January 10, 2014

Moving along

There are steps to this process that I have found I didn't know much about. Take for instance... Dental work, we needed to know the last time that Alex had a dental exam and if he had any unresolved cavities or abscesses. These can cause endocarditis and would not be a good mix with transplant. So yesterday he visited the dentist. That office rocked! I called on Wednesday and they got us in on Thursday. We are so thankful to have such a helpful team. He is totally cavity free and we have a note from our dentist Dr. Colton!!! 
We also are caught up on routine vaccines but if we move forward with listing Alex he needs a couple of special ones. A numococal that covers 23 strains instead of just the typical 13 strains and also Menectra that covers meningitis. We are working with our Peds office in order to see if we can get them close or if we should go to the hospital. 
The little girls played with Papa today while I went for the first time to have my braces tightened. I also got cute black and hot pink colors! Can't wait to have my 'grill' looking awesome! 

Tuesday, January 7, 2014

A busy day

This post brought to you by the letter Zzzzzzzz! Oh wait:) 
Thanks to all the helping hands today! Dropping the girls off at various helpers and driving up to the hospital started rather early this morning. But we made it on time and we even ran through a drive through for a breakfast. That is a rare treat! 
First on our list of appointments was an Echo! When we saw Bell come through the door asking for Alex we knew the day was a good one! We love her and she does a great job at making Alex feel comfortable. If we could pick her for every Echo we would! Then we moved his exercise tolerance test next instead of after clinic. I wasn't aloud in.. Probably because I would push him to do more than what was needed or he would think I would let him bend rules. My kids tend to start to fuss with me around but have them do something when I am not there and they will go the extra mile. He did great and it was very hard. We met with Doctor Su who went over the Echo findings and the tolerance test. Doctor Su is probably the coolest cardiologist there... In case anyone was questioning that. The clot/stagnant blood in his LV couldn't be seen anymore. That means that the Lovenox is doing its job. If it is there and only visible by TEE then it is smaller. He will need to remain on anticoagulants because we don't want it all to reoccure. His function is still very poor. The exercise tolerance test reaffirmed our need to move forward with transplant. I was hoping somehow those drugs had kicked in. While they are bandaging things right now it isn't solving the issues. They like kids to be at certain percentials... At best in the 90's or even 80's( in a heart babies case). Alex is in the 50's. With all that physical energy it seems like he shouldn't need it to be higher. It affects him differently I think... This is just me, but it takes energy to focus on tasks and remember things, to make good judgements and to choose sympathy over selfish desires... I think those are the things it affects in him. We are teaching him.. We will be viewed as too strict or not strict enough... Alas, we are trying. In fact you will catch me reading about how to teach gratitude, graciousness and thankfulness all completely different things. Then because we were there and so handy dandy, I visited with transplant. Questions answered and date set to start the parental evaluations. 
We went to the Rainbow Cafe for lunch... Gator referred to it as a date:) I thought it was hilarious, "lemme carry that tray for ya mom, sept it's kinda heavy... Here you better take it back" 

Off to the lab for blood work and a Xa... Gator was not looking forward to this at all. He doesn't like it, lucky for us our friend Chels was there. If anything she made ME feel better. She did such a great job because it only hurt a little. Chels used to hold Gator for me so I could snag a shower when he was a teeny baby... The other tests were for transplant. Blood typing and a PRA... Because we have so many heart friends many of you will already know this.. Feel free to skip the next paragraph... For those of you who are joining the heart world for the first time here is an explanation. 

PRA means Panel Reactive antibodies... It tells doctors if and when a heart becomes available, that Alex's body wouldn't recognize it right away as not his own and start fighting or rejecting it. They show how sensitive his body is to change. If this is number is high it makes getting a new heart tricky because we can only accept a heart that his body wouldn't try to get rid of. That means he would wait longer to get a new heart, because just the right heart would work. We can use medication called IVIG to trick his body if we find that it is very sensitive. We won't know the results of that test until later.

Last appointment was Neurology, stroke clinic. Best news from this appointment. There are no lasting/lingering effects from his strokes. We don't have to go back unless he had another. DONE and DONE!!! We drove home to pick up our girls... It was such a big day this is what happened....


I missed Eden's observation day at dance class so she gave me a personal showing of her dancing skills!!! 



I can't keep my eyes open any longer! Jeff just walked in from Bishopric duties so we are off to bed! 


Monday, January 6, 2014

Full contact eating

A yummy night of spaghetti??? Stripped her down and with good reason:) She is finally feeling so much better. 












May's birthday

What an incredible first year... She has had RSV, Brinchiolitis, surgery to detether her Tethered Spinal cord.. Visited with specialists to better understand her asymmetrical duplicated gluteal cleft, lumbar hemangioma, and then a CT and swallow study to help us figure out her NeuroEndocrine Cell Hypoplasia of Infancy. Despite all that she is happy and sweet as can be. She has learned to walk and can say a few words and signs her first word... More... She eats like a champ and is so loved by her sibs... She is momma's buddy but Auntie Ave can take her with very little persuasion. She is learning to sleep through the night. 





Oh my gooshie!!! My mom made this baby maxi.. Too cute!!!





Thursday, January 2, 2014

Some days are just tough.

May hasn't felt well at all. We finally gave her a priesthood blessing last night and she slept through the night, giving much needed relief. She was supposed to get her second dose of Synagis today but with a fever it just isn't a good idea. We did find a double ear infection. Probably happened since she has had incredible amounts of drainage... So with her new Nebs med and her antibiotics we are sure to be on the mend... Which my family should be thrilled about since I am a bundle of fun when I am get so sleepy. The kids went back to school today. It felt strangely like a totally messed up Monday. Gator went back for the whole day. The first since his stroke. It turned out great, with just one call home. Our school is amazing!!! I can't say it enough. I am so glad we have such understanding, attentive, helpful people surrounding us. Alex's teacher had back surgery and he has had a substitute.. Both... Well all three women including his French teacher are going to be sainted. I try hard to work with him... Our ADD kicks in and we end up at each other's throats:)  Ry on the other hand was super excited to get to it. Eden missed everyone in the mean time... Today I ran an errand for Jeff.. I bumped into a heart dad. It was so nice to connect.. For him to completely understand in just a couple of quick minutes. Both of his heart babies had HLHS like Gator does. 
May does not like getting treatments.. In order for me to so it alone I swaddled her arms and hold on tight. 

Wednesday, January 1, 2014

Happy New Year 2014

It will take some time for me to get used to writing 2014… I was checking expirations and when they said 2014 it just wouldn't register in my brain. I am slowly wrapping myself around the idea. It has been such a wonderful year for our family. The growth and blessings we have seen have been enormous. We are looking forward to this new year and all that it will mean and bring to us.
It has been a rough week. We have had a bunch of sickies at our house. It makes for a rather bummer of a vacation. I call do-over. Gator had it first and it always scares me when he starts to feel yucky. I took him to an Insta-care. It is viral. That means there isn't anything we can do, go home and ride it out. Well then Eden has been showing signs of it. But she fights off bugs like this like a prize fighter. May on the other hand has been miserable. She has been feverish since Saturday and I took her into the doc who ran a Flu test which came back negative. Whew! We also ran over to get an x-ray to rule out fluid in her lungs. It too looked good. Still she has these awful fevers. It makes me so sad to see her feel so yucky. Now daddy is feeling really yucky. He spent his New Year Eve snoozing on the couch. So our new year party was very chill.





Happy NEW YEAR !!!!!

The last of December

I really needed to post this great long post yesterday. It will be a catch up for family records.
 The first snow and the kids are itching to get out in it. Gator asks me so many times that it is almost frustrating… Finally I say "please get on your gear and go out"!!!!
 The girls love it all too!
 May wanted to go out and play in the snow but her mom is so mean so she had to stay inside
 At least she got to eat Cheeto's




 Eden is a full contact eater. Still….
 The girls had their winter dance recital. Eden was Ellie the Elf. They both did such a fantastic job.

 Any excuse to get dolled up and wear makeup and curl up your hair is a dang good day.

 Merry Christmas!!! These are the kiddies little Christmas clothes!!!


 All dressed up. (we cut Ry's bangs, I am pretty sure it aged my little girl 4 years)

I just had to add, how cute is this daddy with his matching tie????

 Christmas Eve it is tradition to go to the Clawson side for a special dinner and to wait for the Elves to bring our jambes. They are left of the front porch and it is so fun to have new pjs for everyone.

 We draw names and exchange gifts.

 
We also read the story of Jesus's birth.
 



 
 We got to talk to our missionary!!! The best part is being with family and eating till you are stuffed… I should have taken a photo of all the yummy things we have.

 
 Christmas morning after our family sees what we got from Santa and we have opened gifts we head to The Homer side Brunch. The food is every bit part of the tradition. It is always the worry that we want something different. WRONG-O…. We get these super yummy things once a year…


 Enjoying
 I actually got a shot of this one. The other two are so busy playing I can't seem to catch them.
  It was an amazing year. The kids were spoiled.
They each get one Santa gift…

Ry- Hair tools…. Flat Iron and curling wand
Alex- Snow board
Eden- Pink and purple bike
MayLee- Playing station cube

Jeff and I got gym passes… I am so excited to improve my health.

They also got so many other wonderful things.
It was really fun for Eden this year. She really understood the magic.
As you can see we have been very busy.