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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.

Thursday, March 26, 2015

My sixth book

Before you are amazed at my hidden talent, it's just my blog. I have it printed each year. I would have seven books but we combined the first two years. They make me super happy. I went back and read funny things the kids say or did. Remembered and thought about the things we have lived through and watched in wonder as the children grew right before me on those pages. 

Gator is doing very well with his health and seems to be doing amazing. He got to move to clinic appointments once a week. Although clinic appointments are being cut back we still have to check his antirejection medication levels. Today we were able to go to Riverton hospital which is much closer. I had failed my glucos test yet again and was doing the three hour test. We were poke buddies today. I overheard a gal talking to a nurse that was getting her progragh level checked. Being a nosy gal that I am, asked if she just had a transplant too. She was actually on her second kidney and first pancreas. She was fighting some rejection issues and was just working out the kinks in her meds. She was so nice and excited to meet Gator. They visited about all the similarities they shared. 
I think I passed this test too. The third hour screen came back as my only high number. I will have to wait until I hear from the office. I have an app that lets me see results, so I have the test info, just not the official word from the doctor. 

Eden is sleep walking. She does it with a huge smile on her face, but her balance is that of a new walker. When I asked her where she was going, she said she was getting in the van. She must have plans for a trip I am not invited to go on. I steered her safely back to bed and tucked her in burrito style. 




Sunday, March 22, 2015

My amazing Ryleigh

Ry has been busy busy busy lately. I felt like I could finally focus on helping her do something, anything, she loves to try things at least once. We haven't found anything that has made her feel completely committed to make it a passion.
She thought maybe she would give acting a try. When we missed the auditions for a community play. I remembered that one of our very talented neighbors has classes for this exact thing. She was able to start a little behind her group but caught up quickly. She worked hard. She finished up with two short plays, a drama and a comedy. Both of them she rocked. Way to go sister! 
This is Miss Jenny from Acting Out Loud. She is an awesome teacher. Ryleigh is Ernistine Quatlebaum.  A retiree who rides the bus each day and twice on Sunday's. 
This is Ry's star. 
As a result of being part of this class, Ry gets to be a woodland animal in a play at our Junior high. It was tough, but she settled on being a fawn. Her costume and makeup are going to rock. I would love to be a costume designer lady. So fun!!! 
Coming soon:
Pictures and stories of Ry in Shrek! 



Thursday, March 12, 2015

Joy in the journey

Let us relish life as we live it, find joy in the journey, and share our love with friends and family.
-President Thomas S. Monson

In the beginning of his talk President Monson talks about change. How constant change is.
In the hommie house hold we have had lots and lots of change. Most of this change is welcome, and oh so joyful. Some change, although welcome, has been very hard to adjust to. The constant schedule of meds and vitals is a little tricky for a pregnant brain. Oh and daylight saving totally messed up my mojo. I know it's just one hour, but man... I really missed that hour. Jeff has been very busy with the change of his calling, he has managed both things for a little while as a "presshop".  The kids' schedules and routines have been really lax and I want to change that so they are making improvements. May has been potty training. Also a huge adjustment.

all good things... all good things, it's just change. Which can cause confusion and misdirection of priority until we figure it out. We are working hard to figure it out. For family home evening a couple of weeks ago we talked about goals and schedules. We decided to try out a few short term goals and see how we did. A few meaning like one or two per kid, I have to over see each child and my own goals and so that would be a whole load of goals for me. Ry specifically wanted to improve in piano and spiritual goals like being dilligent in personal prayer. Gator wanted to focus on being patience. See, when you are spoiled rotton in the hospital surounded by adults who are willing to do just about anything you ask, it is a rude awakening to be home amongst your sibs who also need attention and would like things their own way.... especially little sisters.... add in a little steroids which cause over stimulation and we have a whiner/tattle tale on our hands. Whoooooweeeee, this momma "ain't got time for that"! So we talked about removing himself from situations that make him feel frustrated and also being able to say that he is sorry for his roid rage. Eden wanted to be better about her homework, which it great because she will remind me ten thousand times that we need to work on it and that we should do her flash cards. I wish some of it would sink in, but maybe she isn't quite old enough to have the memory yet. MayLee May wants to work on her potty training. Now this is a huge goal and we deffinatly take it a day at a time. She does very well with everything as long as I let her play an electronic devise while she sits... Then I try and have her finish up and she wants to stay on there FOREVER....Pretty soon she ends up with a potty indent on her hiney. We always wonder how her Tethered cord will effect her potty training. She could have nerve damage that we don't know about, or she could be just fine. Only time and training will tell. If she does have nerve damage we will cross that bridge when we get to it. I think she will do great and she shows every sign that she will be a rock star potty trainer. This is awesome because I have never had two kids in diapers and I would really like to keep it that way. 
We are thrilled to announce that all the little calves are born and we have seen pictures of their cuteness....
Introducing...
Heartlee-
Gator
Addy
Dozer
Mariah-moo or M&M 
They are super cute, we can't wait until we can go and actually see them. 
Everything going on with Gator seems to be well. We go to clinics, treatments and 
Caths... We change meds and we love that he is doing so well. 
Eden got ahold of my phone and did a series of hilarious selfies.. Where does she get this stuff???


You're killing me smalls! 
Gator was finally were cleared so daddy set up the bike trailer. Gator is absolutely in love and wants to train with daddy and do a bike ride this summer. Jeff said it's pretty tough to pull him up hills but they had a blast going down. 
Eden tried it too, I think she feels a little out of control and so she will probably wait a bit to go on any big rides. 

We are gearing up for spring cleaning, baby room decorating, garden and yard care and just spending tons of energy being together.