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!

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....
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. 


Sunday, February 22, 2015

Ways to stay part of it all

Just one of the neat things about our "village" is our ward (LDS local congregation). I am pretty certain we belong to one of the most thoughtful wards there is. I have been so amazed at the generousity, patience, acceptance, kindness, thoughtfulness and love we have been shown. 
I say this because just recently it has been proven again and again. 
My girls are picked up each Sunday so that I can be home with Alex to give meds. Then Alex's incredible primary teacher comes to our home. She has such fun lessons planned and prepared. Her hubby comes to drop her off and he is such a fun visitor as well. They have visited him in the hospital, helped with his program part, taught him articles of faith, played with him(that's important too), and loved him. The young men bring the Sacrament to our home. It fills our house with such a wonderful spirit. It is an amazing way to feel connected to our beliefs and strengthen us for the rest of the week. 
That's not all. In about 2 months Alex will turn 8. He will have a choice if he would like to be baptized. He will have to wait until it is safer. Because he is on such high doses of anti rejection medications and steroids he has absolutely no immune system. This means he is pretty restricted on places he can go. Home and hospital are the only indoor places he can visit. So he will be baptized in August. We did Facetime in order for Alex to be part of the "it's great to be eight" meeting. I can't believe he will
Be in cub scouts. He gets to have a special Cub Scout leader who will come to our house to start him in the program. We will get him the shirt and book, I will try and stay out of it, but it sounds fun even to me. One of his leaders brought over his Pine wood derby car. He and daddy already scanned the Internet looking at ideas. He can't wait!!! 
There have been so many helping hands for meals, help with the girls, special treats, cleaning, dates to help the girls feel loved.... The list is endless. I have had to readjust our freezer situation to have enough room for all the amazing meals. Maybe I am a terrible cook or maybe it's because I didn't have to make it, but everything tastes really fantastic. 
We could easily be overlooked or even be so hard to accommodate because of our situation. Instead we feel included and loved. I am so thankful for inspired and wonderful people. Thank you for taking the time and energy to help us. 
My two sweet friends Jessica and Natalie even made my dream thank you gifts for our hospital friends.
Tomorrow is another clinic day. I am getting pretty good at driving around and not getting lost. I am really good at getting lost. Even in the grid system here in Utah. I usually take the exact same route and try very hard not to deviate at all. But surprise myself when I make it safely to the hospital, when I have had to change course a little. Gator loves to listen to talk radio in the morning on our way there. Funny kid. 

Alex's check up was awesome! We even got free Panda Express. Everything went great.. Biopsy Monday. 

Saturday, February 21, 2015

Going Smurf status

Talk about a creative medium. Let's paint our hand, instead of paper. She looks upset because I told her it would eventually come off. That it would most likely get into her food, on her face, on her clothes.. 

I guess in her mood she proceeded to paint "stormy sky" which proudly hangs for all to see. Therapy painting needs to happen more often around here I guess. 

This guy came in the mail today... Isn't he so cute. It is incredible the talent that people have and are willing to share. We love him!! 
Everyone seems to be doing well. Alex has had such a great time being home. 

We have some calf news but we are waiting on the last little girl, then I am posting all of their little pictures. Thanks Farnworths for letting us be a part of something so fun. 

Thursday, February 19, 2015

Miss MayLee May

Whooohoooo! Yesterday May had an appointment to check her tethered cord syndrome. We have a new neurosurgeon because our other one finally retired. 

She insisted that both she and I wear a mask. She laughed at the Doctor while he tapped on her for reflexes. She wouldn't do the other strength tests, I don't think she understood what he was asking her to do. Or maybe she was doing the "I will pretend to be shy even though I am not". Her spine looks great for now.. She is clearly meeting all of her development goals. We get to go another year before we see the specialist again. Also,  He asked if she was potty trained yet.. 



 But she is interested so today we did this. 

She made it to the potty three times and had two accidents. It's time for my least favorite parenting job.. We can do it.. It's more training me right now than her anyway:) 
Everyone needs a stool. Just say'n!!

Tuesday, February 17, 2015

Results are in!!!!

What a busy day! Got up at 4:35... Who even knew this hour existed outside of my home/bed? Because of the insane hour, nobody was on the road. It's like a perfectly great driving time. We made incredible good time to the hospital. We were so early we parked and snoozed in the car till 5:45. 

Power nap!

We checked in and they isolated us because of Gators C-diff status.. Although that is resolved now. I sort of liked not having to worry about the other germs that could be in the waiting room. Alex was worried about a lot of things... Like wearing hospital pjs. He doesn't mind the comfy pants, the shirts that tie and snap are just so breezy... I let him wear his cozy jacket... Whew! Then he wanted to know if they could please poke after he was asleep? That wasn't a problem either. He picked Root Beer for his "air" we walked down to cath lab.. He strolled in like a boss, told jokes while he drifted off (his material is sort of getting old) but the cath lab hadn't heard them so he was good. We will work on some new material for next biopsy. I ran over to grab some oatmeal for breakfast, then went back and fell asleep in the imaging waiting room. I startled awake to the pager, ran back to cath... Heard news that his pressures looked a teeny bit better than last time. That is a forward baby step. Hurray! Then up to recovery. Gator was smiling and talking... He felt pretty darn great..... We hung out while he recovered... We were going through the last bits of discharge with the incredible Dr. Lal when we realized he still needed an echo. My fetal echo was supposed to be going on as well. So Gator boy stayed put for his while I rushed over to Eccles for mine...

Bonus baby brother looks awesome. Dr. Mennon said he was happy to say that they are pleased with how the baby's heart looks. I was still so tired from the morning I snoozed through the last portion. Although I tried to be impressive by asking Bell (we've known Bell ever since Gator was a baby) if I was correct in my reading of my fetal echo. I nailed it! 

I ran back to discharge Gator! We surprised Grandma Clawson with our earlier then planned arrival. Which meant we got to hang out with her for a while. I even got a little nap.

Gators biopsy results came back CLEAN! His echo looked great! 

The prayers, good vibes, positive thoughts, crossed fingers, and every other good thing everyone has sent our direction is so appreciated. 

This cookie cake from Howey's was divine! Decorated by 15 year old Britton... A heart-brotha-from-a-notha-motha!!! Thanks guys!