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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.

Wednesday, October 30, 2013

Tube free moment

Into the TP and tube free!

Road trip!!!


I know I always say this, but time just seems to fly by me. I am enjoying it all and that is probably why it moves at warp speed. Jeff really wanted to fit one more century in this year. But, this ride climbed more than all the rides combined this year. (Disclaimer) I think he is a fantastic rider... This is based on what he told me... I am not very familiar with the inner workings of his rides.. I just tell home to go get some peddle therapy. Anyway, this bike ride was in St. George. He did it!!! He finished and not last like he was worried about. I think he did great!!!! I am so proud of him! 
This was also his first century on his new bike... 

Love these little cheer leaders


Monday, October 28, 2013

No good, very bad day

Well, not the whole day. This morning I was able to work on Halloween costumes and I nearly have them finished.... But then the phone rang and it was Ry who was sick to her stomach. I ran to the school to pick her up. I also needed to run a piece of medical equipment back to the company. I thought she would be fine and she was until we headed home, then she said she wasn't doing well and rolled down the window... The rush of air blew the ick all over the side of our van and back on Eden who was sitting behind her... She wasn't finished... I had a reusable grocery bag that she used to catch the rest... We drove straight to the gas station for a car wash. When we got home I went to nurse Miss May. I was sitting there trying to figure out how to clean out the car when Munch came in to tell me her tummy hurt too... Then she proceeded to spew all over the carpet... She is upset and I now have two ick messes to clean up. I don't do it all well, so I am heaving but keeping it together.(barely) i don't have much time to think cause my phone is ringing and I clumsily try and grab it while the baby is attached. It's the school... Gator has ralphed all over his desk. He tried to tell his teacher, it was the French class and he couldn't say it in French to her so it didn't end well. At least I didn't have to clean that one up. I didn't know how I would manage the kids... Dad was far away so he couldn't help. So my friend Issac came to stay with the girls while I ran back to the school in my stinky car. I just threw a little towel over the ick on the carpet. It would wait... The girls had just jumped out of the shower and Gayor hopped in. Everyone was snug in their pj's. I cleaned the van with the baby in the stroller to keep her away. She was not having it. She wanted to be down when she was up and up when she was down.... My friend Angie must have heard my prayer cause she came to hold the baby while I cleaned, disinfected and de-icked. May spit up,., it doesn't count tho right? Eden made it to the bathroom but missed the toilet and ended up shooting it on the wall and floor behind.., that is fun to take care of... I guess if you have a hasmat suit you are welcome to come by, but if not you better stay away. 

Friday, October 25, 2013

Gramma has skills

My mom is amazing... She made this tiny maxi skirt... It turned out so cute. I even have it on wrong and it's darling. Ry has her order in for one too. 

Reflections 2013 Believe, Dream, Inspire

Alex did a watercolor titled 'rainbow after a storm'. He won Award of Excellance and his painting will be moving on to regionals.

Ryleigh entered the photography portion as well as did a painting. Her photo titled 'pink rose' will be moving on to regionals. Her painting is beautiful. We will be framing it to put in our family room. I am so excited for both these kids!!!

October birthday get together

May at Gramma and Papa C's 

Gramma and Papa

Auntie 

Birthday girl
Arli
The most flattering photo of aunti Ave, ever!






Tube free minute

The changing of the tubes. May is so happy to be off her leash for a few minutes. She crawls very fast and cruises along the furniture. 

We didn't die

We thought we were going to, but it turns out it's actually good for you. What is this you ask???? Well, Ry and I ran that 5k. Ry only cried one time. We did it!!! It was good to have her do it with me. The after party made it all worth it to her. Daddy did the bike tour and came in second place. We are so proud of him. It is amazing that he has improved so much. 
It was pretty cold out that morning. 

Looking good!
Keep going!

Check that off my bucket list. Now on to trying out biking. Can't wait to get started. (Read that, I can't wait to have sore booty) 






Thursday, October 24, 2013

Coach pitch

The season ended for Gator and coach pitch. I was surprised at how much he enjoyed it. He had great hustle, a nice arm, and can really hit the ball. Letting him play while he is small enough that he won't get injured is our goal. If he LOVES it then we can talk a protection vest of some sort. He was a typical kid; picking grass, putting his mitt on his head, stacking up as many hats as he could while his team mates were batting. It was funny to watch. Plus everybody hits, everybody wins:)



Wednesday, October 23, 2013

Gramma and Averee

Gramma and Ave came for a day to play!!!! Auntie Ave is doing a photo class, she took all these photo's for me!


May decided to help with her nebs treatment...


We went to Gardner Village on a witch hunt. 

To shake our booty

To check out some shops


And to hang out together!


Not for the weak in stomach (I am serious, Don't look if you will get queazy)

Well what do we have here miss May? Why are you so stinky and wet????

Surprise MOM!!!! I did a number just for you! Pooptastraphy. Curious how you are going to manage this one?

All the way up and in her hair... Are you kidding me? She feels so much better! Um I think it may be time to move on to #4 diapers.

Girls Well Check.

The little Girls went in last week for well Checks... Awesome that there are no shots this time. I prepped Munchie anyway. She was disappointed because they don't get to pick out of the prize drawer unless there are pokes...  Here are the results.

Eden who is 3-
Weighs in at 36.2 lbs and is the 90th % (just two pounds short of her big brother)
Is 38 inches tall, that is the 72% (she is almost as tall as her brother too)
She wears 4t clothes for the long legs she sports.
She also went to the dentist and has no cavities.

MayLee who is 9 months-
Weighs in at 18.15 lbs and is in the 60th % (2 pounds shy of the weight limit on her carseat)
is 30.5 inches tall, that is the 99%
She wears 12 month clothes and some 18 month depending on the make.
She has 2.5 teeth and will bust 3 more through any day. (ask me if that is fun?)

Both girls are impressive as can be!


Tuesday, October 15, 2013

a little crooked crack update

I know that she will be totally embarrassed that I shared her back end for all to view... But she is a teeny baby... with an incredibly cute and colorful back end.
The incision is completely healed now. It looks a little crazy with the purple polka dots going up it. I assume that they will eventually go away. I also thought in my day dreams of how I thought something like this would look once repaired that her sacral dimple would go away.  It is still there. Her hemangioma is finally at the stage where it doesn't seem to be growing any more. The red raised bumps are new and not going away. They might be related to the the hemangioma still in it's growth cycle. Or not...It's hard to know. That is the beauty of having documented it all with pictures. I can look back and see the progress and changes.

We got stopped at the store today. A very nice gal was curious as to why she needed oxygen and I told her... The long version is so much more impressive and I let it roll of my tongue. She shook her head and said the title was bigger than the baby. The same gal was parked in "preferred parking" (the handicap parking) and I offered to return her cart for her, so she stood by the car with the baby. She noticed that I was driving the van and asked if May was my only... No, she is my youngest of 4.... And not my first to be on oxygen. I told her about Alex and HLHS... Laughing she shook her head and squeezed my arm... Went back to her car and said "I see that you are still smiling"! I said absolutely cause the other way to do things just isn't an option. She completely understood. 






NEHI update

Last week I received a phone call from Dr. U. He had the information back from Denver. It is confirmed NEHI and at this point we won't be doing a lung biopsy because it is such a text book case. Well most of it is text book. The NEHI portion is. The fact that she also has Tethered cord syndrome and a lumbar hemangioma is interesting. She is one of a kind. We will still be doing a few more tests to rule out absolutely everything else. She will have a sweat test to rule out CF. That doesn't seem to hard so we can manage that. I think she also needs some labs done to check her Iron levels again. She has a ped appointment on Wed. so I think we can work with her doc to get those done. We will be sitting down with Dr. U  to go over everything and to discuss the nitty gritty details. I always have a little list of questions. Hopefully he will be able to answer them. This is such a new thing that not much is known. I watched a little video on Youtube about a little girl with NEHI and they talked about 400 to 500 cases world wide. I am mostly curious to see how this will effect her and her other issues. She is hitting all of her milestones and does very well as long as she has her oxygen. We have given her what I think are little breaks from it. It takes her hours and sometimes days to recover from the breaks that I can see right away that it is needed. 

As we move into sickness season I am getting nervous that we will be slammed with illness. I hear someone cough, my own kids included, and the hairs on my neck stand on end. My hands will crack and bleed from the washing. I am taking vitamin C hoping it will transfer through me. It might be a long lonely winter.

Down Town

General Conference landed on Eden's birthday this year. We thought it would be fun to go with daddy and papa down town to hang out and explore City Creek Center, while they attended the Priesthood session of conference. Half the fun of going is riding Trax.

It was a little scary for me to think of how we would navigate the stroller, oxygen, the diaper bag, a baby and a busy 3 year old. But, with daddy there we managed just fine. It is always a treat to people watch on the train too. You have to be up close and personal.

Happy Birthday to Eden

Miss Eden had her birthday. Turning three is such big business. She could actually open presents all on her own this year. The understood that gifts were given. And that there would be some sort of treat. I asked her what she wanted and she kept saying "pink icesream" I have never attempted to make an ice cream cake so we just had to improvise.

This little squish was happy to snag any paper that came her way.

She was so spoiled this year with clothes, boots and a toy from her sibs.

She also got gifts/cards from her Great Grandparents.


Waiting on the yummy stuff.

I know that she looks homeless. We went out back and picked raspberries. She ate them as fast as she could pick them. Then she would come and snizzle some out of my container. I didn't mind too much. Anything for this cute little birthday girl.


It took us a couple of trys to make it through the birthday song before she blew out the candles. She did it!


Dance observation day

Everyday we go over with Munchie which day it is. If it is a dance day and how long before we can go to dance. This little girl loves to be in her class. She is so excited to be part of something. I love that they have classes for little littles. 

She even gets to be in class with her best friend Abby. Abby likes dance too after she isn't sad anymore. So we didn't get any photo's of the girls together. Although they are so funny to watch.

My Ry is getting back into it all. I think it is a great workout. Maybe I should sign up for an adult class.

We have to sit out and enjoy the grass for a couple more days. It won't be long until the snow comes and we are inside all the time. 

Gator is my favorite. I think he has more injuries related to riding his bike more than anything. Yet he hops right back on and is off again. Even sporting his boots. Speaking of injuries...The other day he collided with someone on the play ground. His poor teacher sent him to the office in a panic because two students came up to her and told her two very different stories and when she saw him, his nose was bleeding and he was holding his arm. One student reported that he had fallen from the jungle gym and had broken his arm. The other the collision story. So to be safe she sent him to the office right away. They of course call me. I was sitting out front of the school waiting for the kids to be out so I just popped inside and found him sad but okay.  He wouldn't let anyone look at his arm because the blood had adhered his shirt to the sore. So I did what any good mom would do and pulled his shirt off while he wailed loud enough for the whole school to hear. It was just scraped up really good. So we bandage him and off we went.