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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.

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.. 












3 comments:

Julia Brown said...

Awesome. Every last bit. Loves!

Bethany said...

Happy happy!

Sarah said...

Hopefully this doesn't post twice.

I found your blog via a KSL post. My 9 year old son has NEHI too. We are LDS and from Utah but now live in Kansas.

I don't know if you know many families with a child that has NEHI but if you'd like some more you can contact me at coriannesmom @ gmail.com (no spaces) or FB. Your kids are beautiful.

Sarah Ince