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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!

Wednesday, May 20, 2015

We had sunshine once

It's been a very rainy last couple of weeks. Right before the awesome rain that greened up our lawn so nicely that we haven't had to turn our sprinkles on yet, there was sunshine once. The kids (minus Ry who was at school) found their swim suits and played with water guns, ran through the sprinkler and jumped on the tramp.. Hours together outside and happy. 









Jeff and Gator were support for an all ladies bike ride called the Goldilocks. It poured rain that morning. They picked up a bunch of riders. Most needing to be treated for hypothermia. 
The rain has put a hold on training for daddy. It didn't stop him from doing the Grande Fondo. The course came right by our house. I took the kids over to cheer for him. 

Ry had a French night at school. The students displayed art, gave short speeches and we had French treats. 
My little stinker.. She found a stamp and decided to... Ummmm... Eat it? 

Plus anytime she is tube free, she looks so different I have to snap a little photo. 
Eden finished off her first year of preschool. She had her program tonight. This year she learned how to write her name, can say the Pledge of Allegiance, knows the days of the week, can say most of the letter sounds and can follow directions. I have no doubt she will do amazing things. 

I am not going to complain too much.. I am huge, and uncomfortable. Just three more weeks till baby gets here.. Three more weeks people.. There is an end in sight. 
Ry helped her momma out! Thanks for my cute toes.. I start NST tomorrow..  

Last bit of news, we painted the nursery today... Just need to do touch ups and get the room set up. The kids are off track. Although we haven't been able to go too many places. Alex has had low WBC and that means fighting infection or illness would be tough. So we hang out at home and try our best not to drive each other crazy. 














Friday, May 15, 2015

It's just waiting for me!!

Here is a little conversation with Eden..
E- Momma can you help me button my purse, I am taking it with me where ever I go. 
Me- really? Why is that?
E- well it has my money in it and if we go to a store I NEED to buy something. I do, I have money and it's just waiting for me. Waiting mom... It's just sitting there...

Cracks me up.. I looked at her money and it's about .36 cents.. She is going to buy something people. 

Clinic and IVIG treatment

Gator had clinic on Monday.. He is doing great! His health and overall well being is better than its been his whole life. Blood pressure looks great, magnesium levels are good, liver is back up and great, he is tan and has energy... 
Treatment went smoothly.. It was a sleep over in the RTU.. He played video games and had room service bring him lots of yummy treats. Now we wait on a DSA.. Or donor specific antibody count. Hopefully it will continue to go down. 

Ry has continues to do well with her braces and expander.. This is Ry's chalk art. 

Eden is busy busy. I try and catch her in pictures, she is so active I can hardly keep up with her. 

MayLee is my helper and wants to "be big too". 



Monday, April 27, 2015

Something hoped for

In the days leading up to our miracle of transplant for Alex things seemed pretty bleak. Yet Alex was still planning his future and thinking about his birthday and turning 8. For those of you who don't know much about the LDS or Mormon faith. We get a choice when we turn 8 that we can now be baptized and become an official member of the church. At 8 we can choose right from wrong. We also receive a special blessing called confirmation, this is when we believe we receive the gift of the Holy Ghost. If you want more info I am happy to share.. But now you understand a little bit why Alex was so excited for this special birthday. He had already decided a long time ago that baptism was something he wanted. We weren't sure how we were going to make it work. 
With his new heart, we can!!! He CAN!!! He got this suit for Christmas.. I honestly thought it would be a suit we buried him in (horrible thought, but one of my realities). I love that he can wear it now! For this awesome milestone. 

On Tuesday was his 8th birthday!! We went to a special lunch at Olive Garden where he had shrimp Alfredo. As you can see he loves this dish!!! 
Grandma Homer's is his very fave but he likes Olive Garden too..

Then we went to Smith's!!! Bruce And Jeff and their team sang to him and brought us treats!!! 



We have and will continue to celebrate throughout the month.. 

May loves helping with yard work. She just needs a little more time to hone her skills. 
She also love love loves the swings at the park.. We spent two hours there and she spent all but 20 mins in the swing.. 
However this is what happens when you take yourself off your oxygen..
It wears a sister out! 












Tuesday, April 21, 2015

Megga catch up

 There is so much to say and to high light for our family memories. Memories I don't want to forget, so I am writing it down.
 Going back to March....
 I actually did fail my glucose test and did the classes for gestational diabetes dieting. I get to poke my finger and test my glucose four times a day. I am starting to feel less toxic. I adore the end result.. but being pregnant is less desirable.
On Saturday the 28th Jeff went on a ride with a team he joined. He was a little late and decided to stay back with a small group of riders that had to replace a tire and so they also got a slow start. He stayed with one particular rider because she knew the route better than he did. It was just these two riders with her leading and Jeff following about three bike lengths behind. A dump truck trailer and a pup on the back came up and was cautious of the two riders slowing to 15-20 MPH and also swerved out to give the riders plenty of room. As it was moving back to cross railroad tracks and the lead rider also got herself parallel to cross the tracks the pup pulled her under and she was instantly killed. Jeff witnessed the entire accident and was horrified that he could do nothing to save his fellow rider and new friend. We have come to find that Noreen is an incredible lady. She has an amazing family that will miss her so much. Jeff has ridden again, I am grateful because he loves this sport so much. He is honored that he got to ride with Noreen. We attended her viewing to honor her and support her husband. It was beautiful.
The evening of the accident was also the general women's conference. Preslee, Ryleigh and I got to go down to the conference center. I enjoy getting to be with two of my best girls. We/I don't take very many minutes away to hang out together. It's usually busy business as usual. This was a great uplifting way to get out.
On the 30th Alex had a biopsy, clinic and treatment. His biopsy came back with zero rejection. We are so thankful for each and every bit of this great news. We also got news that Alex's antibodies are going down. That means that his body isn't trying to fight his new heart. He did great during treatment. I took him that morning and then Jeff came and stayed with him so I could get home and be with the girls and rest. Biopsy days take it out of a person. His health has been so great that we have been able to cut back even further to every other week clinic visits. It has been very nice to not have to make the early morning drive up to main campus or even Riverton campus for a trough. 
April started out with a BANG!!!
Daddy tried to April fools me, but you have to wake up pretty early in the morning, now a days, to pull one over.  The kids tried all day to get me too... I must look gullible or like an easy target because they tried and tried. "Mom!! there is a spider on your head.... April Fools" I think I got that one like 49 times.
The kids had spring break, we enjoyed general conference, and Easter Sunday. Coloring Easter eggs this year was especially fun because the kids were all big enough to enjoy it. We got some awesome eggs. Sorry about the topless ladies.. Egg dye and shirts don't go well. 



Then we held our very own Egg Bash on Monday for FHE. This event is fun because you never know who will win. Two people sit across from each other and roll their eggs so they crash into each other. There is some physics law that says only one egg will crack. The one that doesn't is the winner. Alex was the champ of our family this year. 
I don't know how the kids stumbled on these Youtube videos about Kinder eggs, surprise eggs, or blind bags... they love them. They watch as they are opened and reveal the little prize inside. Well,  they loved Easter baskets because with the plastic eggs, it was just like opening their very own surprise eggs. While I think it would have been amazing to actually get Kinder Eggs, apparently they can't be found in very many places here in the states. To order them makes each little egg 7 to 10 dollars. We do have blind bags apparently, because the Easter bunny brought one to the little girls and Gator.  They were a huge HUGE hit. 

 Easter dresses in Sunshine Yellow! When MayLee got all dressed she looked at herself and said "I am dis(just) so bow-ful (beautiful). I agreed of course. Those little girls couldn't help but twirl and twirl. 

Weeks fly by, and that is great for this gal. I can't wait to snuggle with our newest little guy. Still no name settled on. We have a few names we are tossing around. My belly is getting rounder by the second it seems... Although my self esteem is shrinking... Very large, very uncomfortable... We did get our c-section date of June 12th. There is a light at the end. I just have to tell myself I can make it. My first two babies were not c-section, in fact Ry was actually over due. I thought I would be pregnant forever. I know that can't happen, but it sure felt like it. Since both the little girls came via c-section and I have GD, I get to have this little guy that way. Unless he decides to make an early appearance, in which case we shall see. 
Potty training has begun. We are going slow and making it super fun. She can't do the thing that trained the others. Blowing out matches doesn't work with oxygen. Let's not blow up my toddler. So we found she does love the little carousel at Smiths.


Ryleigh is getting her teeth worked on next. Last week she got spacers in to prepare for braces and a device that widens her jaw? I may not fully know what I am talking about. I just know that it is better to start now because the crowding in her mouth looks like a shark on x-ray. Tons of teeth with no where to go. Today she got them on. So far she hasn't been in too much pain. We have to crank the devise twice a day. We even got to watch our friend and Ortho (Glen Bills) make the piece that widens. 
 Ry also finished her first official play. Shrek the musical. She was a woodland animal.. a fawn... She thought is was so much fun. She did a great job and wants to give this acting and play business another shot. 


Jeff officially opened his biking season last Saturday. We woke bright and early for the Salt Lake marathon tour.  This makes it 4 years he has been a part of this tour. We didn't have the kids with us like we usually do because we were at a conference. It was nice to be able to get up so easy and head over. It was also nice because I was able to do something I haven't before. When the first riders crossed I clocked their time. 7:06 AM.... Then I counted each additional rider that crossed to give Jeff an idea of how well he had done. He crossed at 7:23 but also started in the fourth heat. He was rider 51 out of close to 1000. I am super proud of him and I am sure that he will be pushing it hard next year to beat his time. Man he is fast. He also was able to have his buddy Mark, to do this with. Thanks Mate! 

Eden and MayLee are busy and funny as ever. They keep me on my toes and make home life interesting. Every day that there is sunshine and good weather the girls want to go out and play in the circle. Eden begged daddy to take the training wheels off of her bike. They started working on getting her riding. She will pick it up as fast as the others I am sure.
I just have to share this amazing gift we received. Over the past couple of months I have talked about how wonderful our school is. I just think the secretaries are so thoughtful and probably the sweetest ladies you will ever meet. Especially Bobbi... She made this for our family and I adore it. Ry was even able to help. When our family opened it, it was seriously and event. Then we all had to snuggle it and ooooh and aaaaahhh over each heart and choose our favorite. It has taken it's place of honor in my front room because I love looking at it and showing it off to everyone who stops by. Thank you soooo much! We love it, I am amazed by your mad skills Bobbi! 


(Even the boxes were fun!) 
Just had to share my view of scripture study.. I promise I just took one quick picture and then followed along..