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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.

Sunday, December 22, 2013

Zoo lights

Our first year to see the Zoo lights! It was fun! 
And ccccooollllldddd!!
And nobody wanted to walk... 

Or was very tired...

Or is going to hate their mom for posting this awesome picture!!! 





They are silly sisters

What ya doing in here Eden???? 
May said she NEEDED me mom!!!!



Nummy oatmeal for breakfast

May loves to eat. She prefers food over interesting things to taste. Eden would taste anything. I tried to list all of Eden's trials one time... Grass, dirt, dry wall, paint, dust, wrappers, dryer sheets, and so much more that I gave up. May is also a enthusiastic eater. Most of her meal ends up on her or like a mini food explosion. This is the one and only time I am tempted to have a puppy. That is terrible of me to think of doggies as floor cleaners. So I sweep. Some foods must dry before attempting to sweep them. Like rice or noodles... Unless it's dry it just doesn't work people. Oatmeal is another culprit. Plus it gets stuck in hair and on clothes... But she sure is yummy anyway! 



Friday, December 20, 2013

Christmas Card

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I wish I would have had more hours in my day to do actual cards….

Best wishes everyone!!!!

Wednesday, December 18, 2013

Ship shape

Monday we ventured to school. Munchie stayed with friends and I took Miss May. Oopsie, I forgot the stroller so I lugged the half child and May around. Or followed her closely as she walked the halls. It was an eventful day for the office and I hated being one more worry. Let me add here that our school is exceptionally amazing. The principal, office staff, and support staff (lunch ladies, play ground aids, phycologist, librarians and other teachers who know of us) are so thoughtful and helpful and don't make me FEEL like we are one more worry. But I wasn't born yesterday people.. Having an extra couple of not invited, non helping loops around can cause some stress. I am so glad for their continual support.
My momma heart could not be home and be worried the whole time. I watched him stroke and I was helpless to do anything. That is a yucky memory that I can't erase. Try try try as I might. Leaving him for long periods of time, will be a struggle I am going to have to work through. 
We went for 3 hours. Some of that time was filling in his sweet class about how he is doing and answering their questions. They were good questions too. We explained that they couldn't get Alex's sickness. We also talked about why he was gone for so long and why is brain 'went to sleep' and thanked them for the mail they sent and little gifts. That sure can make a person feel a lot better. He also told them about his shots. Getting his whole class to laugh when he said he gets his shots in his legs not his bum (turn around wiggle wiggle) -he is a clown.... At the end of the time he was really ready to be done. Tired and ready to lay down, hungry for a snack, thirsty, and having leg cramps. Those 3 hours were pretty long. The rest of the day was hard. He was cranky and whiney. I was impatient with him on multiple things. He was doted on in the hospital and expecting the same treatment at home. Well it wasn't happening the way he envisioned. We decided no school today. Instead we worked together for 2 hours at home laying about and translating French math, reading and taking as many breaks as we wanted. We also went to the school for an hour while the little girls stayed home with our Home teacher. We met with the district nurse to update Alex's medical plan. The Secretary and Principal sit in on this meeting and yet again put my concerns at ease.... Or at least more bearable. I like the nurse, but he doesn't problem solve and soothe like the school team does. This makes even more grateful for them. 
Eden asks all day long to go play at the houses she has visited. Gator wants to go outside and play. Which he can't in red air days. The temps being so cold don't help. MayLee thinks she is the bomb diggity for walking, I agree. Ryleigh keeps everyone informed with her knowledge of what is going on, her ability to cope is inspiring. We are all regular nuts. Thank you all for your kind gestures of love and support. Jeff and I have decided to move forward with the evaluations for transplantation. We went over the packet-of-crazy tonight and find confort in our attempts to improve Alex's life. 
One of our awesome neighbors (who happens to be a heart grandma) brought over Mrs. Fields cookies...that is Homer therapy in a nice brown bag. 

Sunday, December 15, 2013

Home is busy

As much as hospital life is crazy, home life is just as crazy or more so. My mom came to stay with us to help me with all the kiddles and all the house stuff. I get embarrassed to have house work help, even my mom helping made me cringe... But, in the end I was so relieved to have laundry done and dishes cleaned that I am so grateful for her persistence. I am not talking just a couple loads of laundry... We are talking mountains:) I knew she could move mountains, and she so proved! I also felt guilty leaving her alone to manage the troupes while I took gator to get his blood work testing anti-Xa, protein c, protein s, anti-thrombin, pro thrombin gene 20210a/g and factor V lieden. He was not at all happy about doing labs. His buddy Tyson went with us , which  I am convinced is the only way he would do it. He hasn't been that big of a fan about the injections 2xs a day. But, he doesn't cry and pout with everyone any more. With all things we dislike, but know we must do, finding a happy will help. The happy for Gator man is that at home the shots are little needles. Diabetic size. His friend Joe brought neat-o bandages... He gets to pick one each time. So along with the other meds he is currently taking he will add these to his list. I bet you think we have friends at the pharmacy! 
We have been absolutely spoiled. I am so grateful for everyone. It is amazing that you can see a need and fill it. 
Tomorrow should prove interesting as I try and let him manage a part day at school. Wish us luck!

Friday, December 13, 2013

We made it home!!!

Gator had another great night! He had a blast when his buddy Joey came up for a visit. Having a friend visit was the BEST medicine. 
They played Go Fish and had slushies. 
Then we had some amazing friends bring up some yummy lunch that Gator decided sounded better then his. 
Nothing was keeping us there except his level checks. We can be home together and I can go to Riverton tomorrow for his labs. 
Our sweet friends brought a box full of stuffed animals for Alex to take around to his new friends. They also brought a Santa hat to wear so he can feel like he is  the big helper. He LOVED handing them  out . It made him feel so good . 
After all that we headed home and he crashed in the car ... 
Bed boy ever !!! 
We are so thankful to be together again. 

Wednesday, December 11, 2013

The girlies

While Gator is away the girlies will play... It is hard to juggle one little girl when Gator has things come up with his heart. Ry has done amazingly well for a girl who has been 'bounced' around a bit. But having all three has been especially hard on this momma heart. May is still a nurser and high maintenance because of her health. But, we have had so much help and wonderful friends and family to run them to their activities and to and from school. To paint nail and have a special prize means so much to them. So what could have been such a hard thing for me has been an absolute gift. If every single person who experienced a trial could have this much support and love, what a great world this would be. Everyone has been so wonderful with their calls, visits, text, emails, and FB posts.. We appreciate every single one. Forgive us if you have sent us a message and we haven't responded yet. We try so hard to make sure you know how thankful we are. But surely will miss someone here and there... We love you!!! Thank you!!!! Your prayers are working, I can feel it. Just when I get discouraged or even a little mad because I think things should be different someone is inspired to write that they are thinking of us and praying. It may sound silly but that is my happy for a minute and I feel like I can't disappoint you so we move ahead. That is how it works for me! Funny thing is, if I fell I know how many would be there to pick me up:) 

Here is Miss May enjoying our friends!! One of her biggest, bravest helpers Tyson! 
Tyson you Rock for helping us out;) 

Gator today!!

I thought I posted something earlier... Turns out I must have deleted it. Alex had a great night. I slept next to him and we nuggled-me (snuggled). He had some tummy troubles last night and some rhythm issues which kept us in the ICU another night. And because there were also head aches they felt better about keeping him there. He was okay with that except he had to stay NPO (doctor words-no food or drinks) so I did it with him.. That is hard for me let alone a little guy:( . Our nurse was Michael who we love, so even though it was tough, Michael made the best of it. He played cars to pass the time.. Wednesday is Bingo at the hospital so we got play and win a rad prize!!! Then after chatting with the Cath team about our hopes with our three choices, they decided to move us up to the third floor!!! 3084 baby!!! On the third floor I have him his Lovenox injection... We also got a visit from the coolest Grizzlies!!!

They have him a mini stick and a real signed puck!!!! Which he felt like he needed to play with. 
It's been a whirl wind of a day. 
He just got his dinner of bacon, top Ramon, popcorn, milk shake... What ever!!! 




Tuesday, December 10, 2013

Lights and sirens!

Soooooooo here you go. 
Last night we were coming home from a birthday party for Jeff's business partner Nic. We asked Alex to get his seatbelt on. He did. A few minutes later he turned on the overhead light and undid his belt. We asked him to put it back on. I noticed that he was looking very tired and then very sluggish and limp on his left side of his face. He let his eyes roll around in his head and I knew something was wrong. Jeff pulled over and I jump back and re-did the seat belt and we went to the hospital that was 1/2 mile away. When we pulled up I jumped out and carried him into the ER. I asked for help... I was panicked and you could hear it in my voice. A male nurse scooped him up and carried him to a bed were things rushed in blurs around me. I think there were around 10 people working on him and asking me questions. They stripped him and began an IV, pulse ox, blood pressure cuff and EKG. Next we needed to get a CT... So many tests done in a flurry. Riverton isn't as well ready to receive a complex case like Gator so after a blessing which calmed him. He rode by ambulance with sirens and lights to PCH. He was feeling better by then and wanted to sit up and see out of the windows. Tyler was this darling EMT who was so sweet and way rad. We went straight to the PICU. It was so comforting to see familiar faces. Julie and Ben were here. Then we met with Nuerology. We needed to determine if Alex had a stroke. They would give him a special medication called TPA to reduce the effects of the stroke. I can't remember what the rating means but they gave him a 2.5 and therefore did not need to have that medication. They did need to have him have a MRI. That would give everyone a better idea of what we were dealing with. The MRI showed that Gator indeed had a Stroke. It was a little one. One that he recovered from. He seems just like our boy. Whew!!! Now we needed to identify where that pesky clot came from. To find out more about it all we did a transesophageal echo. This test showed that Alex has a clot in his left non existent ventrical. We have three options on what we should do about that darn thing.  I was home with the girls during this conversation and do not fully understand what each of our options are but I will try and explain. 1. We would open his chest and see his ventrical closed so that nothing goes in and nothing goes out.. This is of course extremely invasive and not really what we feel is best and so we have taken it off the table. 2. To fix it with a coil during a cath. More intense but not totally off the table 3. Is to treat with anti coagulants (lovenox) and watch and wait. We have started the Lovenox and he will stay on it long term for right now. They also reviewed the MRI again and found two other spots on his brain indicating two other strokes. These could have happened pretty much any time between now and his Fontan. Kids with the Fontan are more likely to have strokes because they have a clear path without the aid of the lungs to filter out little clots like these. Because Alex's heart isn't squeezing hard, blood can pool and make these little clots. Also since we are here we will meet Transplant. It doesn't mean that we will move forward in any way. It is simply a chance for us to chat with that team. All of these measures to preserve his brain will be so when the time comes he can get an over haul and a new engine. Amongst all of this the girls have been such sweet tempered helpers. They are trying so hard as always to be happy and do good. Ry is old enough to see the stress we are feeling but she is brave. And Eden ran out to the car today when I got there thinking I had brought Gator home. She cried disappointed cold tears when she went out to find him in the truck and he wasn't there. "He is dis my buddy"!!!  More later!!! 
In the ambulance! 

Playing IPad today!! 

Totally silly stringed!!! 



After his TEE

Double barrel drinks








Monday, December 9, 2013

May and some of Edee

I found these on my card and thought I would add them. MayLee is so yummy! I am often surprised and tickled that dispite challenges, we can be happy. It is about how we view things. Even in the bleakest moments we can find something to be happy about. If we choose to then focus on that one thing no matter the size... It can make our whole attitude change. 

The length of tubing rocks!!!! She can sit outside and enjoy the grass and still have her whiff!!!







Sunday, December 8, 2013

Ready for a novel??

Last we left off.... 
The kids were off track and we were doing as many fun things as I could manage and stay sane. We wanted to visit Grandma Clawson and Ave... Well and Papa Clawson too, he was just at work. Even though my folks only live 45 minutes away, it takes some crazy planning. While there, we still had to run to the home health office and grab another tank. But we hung out and went to the $ movie to see Planes with Ave. 
My momma and May!!! 

Papa plays! 

Papa plays 

We had an amazing Thanksgiving-
We went out to breakfast as per tradition. We got our huge news paper... The best part is wearing our pjs. 






After breakfast we went home to get ready for dinner at Grandma and Papa Clawson's house. 

I made little outfits for the little girls. 
We ate very yummy dinner.. I was a pumpkin pie making virgin. I don't think I should make it again soon. The crust was awesome. But the filling was not good. I think I forgot the sugar. I should have made one way before for practice but ya live and ya learn. 
To keep Preslee and Jenivee close to our hearts we wanted to do something that would include them even though they weren't physically there with us. I came up with the idea of grateful luminaries. Each person put things that they were thankful for. Preslee sent us hers and we got to hear here gratitude for this years blessings. On Jenivee's we put things we love about her. Her sweet little smile, twinkly eyes, the fact that she made my brother and sister in law a daddy and mommy! All of our lights joined together. 
We put Jenivee's in the middle. The light from the street light made it hard to see them so we had to move them to a line in front of the house. 



After that we went to see Frozen! It was so cute! Ry has been playing Frozen ever since. 



We are some of the nutso people who get up super early for Black Friday. 4:00 came really early. We brought Ang this year! It is so fun to have an extra friend to be in the lines with. 

Thanksgiving extended version happened in Richfield the next day... Spending time with my family is one of my favorite things. Plus having turkey dinner again is the best! 





We also played with G&P Homer.




The kids went back on track and the crazy life returned. We missed sleeping in but it will only be three short weeks until we are off again. They were also recognized at the Reflections council level night. I am so proud of them for making it that far. Ry has huge plans for next years Reflections. She wants to enter almost all of the categories. 




.....and the best news came on Friday. All those prayers and well wishes must be working. We have been so blessed to know so many willing to remember us in their prayers. It is very humbling to have so many willing to serve us with meals, treats, calls of concern and love and so much more. Every single thing is so wonderful and we wish that thank you was enough to show our gratitude but we feel it insufficient. Alex's cardiologist called. He explained that he had been in touch with transplant and instead of just passing his case off he went through everything together with them. While Alex's heart is still not optimal, very far from it. We think we can hold off longer. We will let the medication (Digioxin) work longer and redo his echo, x-rays and EKG in early February. We can make better decisions then.... Hurray! We get to be together and not stress (too much) for the holidays. Heavenly Father is truly aware of us. Learning that we may or may not face transplant soon have given us such a glimps of what that bridge looks like. It seems anything is bearable with all the support and love we have had. Alex had a very sweet priesthood blessing given to him by brother Walker. I had one given by my sweetheart. I have felt like we would be able to have clear answers to our needs over the next couple of months. That clarity has given us so much peace. Onward and upward:)

May has had her first synigis injections as well as her flu booster. Those big old needles are mean. But they will hopefully help protect her. 

We have also all had some sort of icky cold and pink eye!!! Hopefully we are on the tail end of all that business.